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$Unique_ID{PAR00501}
$Pretitle{}
$Title{Additional Resources}
$Subtitle{}
$Author{}
$Subject{Resource Resources organization organizations group groups
association associations information}
$Log{}
Additional Resources
Abortion (Pro-Choice)
National Abortion Federation
1436 U Street, N.W., Suite 103
Washington, D.C. 20009
800-772-9100, 202-667-5881
Organization of abortion service providers such as doctors, clinics, and
women's health standards who set standards & guidelines; provides information,
makes referral, publishes professional and public materials including
Consumer's Guide to Abortion Services.
National Abortion Rights Action League
1101 14th Street, N.W., 5th Floor
Washington, D.C. 20005
202-371-0779, 202-408-4600
Organization seeking to retain rights to legal abortion, educate the public
and influence government policy; publishes newsletter.
Religious Coalition for Abortion Rights
100 Maryland Avenue, N.E.
Washington, D.C. 20002
202-543-7032
Organization of religious groups seeking to continue legal right to abortion,
educate the public and influence government policy. Publishes materials
including a quarterly newsletter and fact sheets.
Abortion (Pro-Life)
Americans United for Life
343 South Dearborn, Suite 1804
Chicago, IL 60604
312-786-9494
Organization devoted to protecting life, and opposing abortion and euthanasia.
Supports Legal Defense Fund, maintains library, publishes various materials.
Birthright
686 North Broad Street
Woodbury, N.J. 08096
609-848-1818, Abortion Alternative Hotline 800-848-5683
Network of independently operating, interdenominational groups devoted to
providing alternatives to pregnant women other than abortion. Offer classes,
telephone hotline, and various printed materials.
National Right to Life Committee
419 Seventh Street, N.W., Suite 500
Washington, D.C. 20004
202-626-8800
Organization opposing abortion and euthanasia seeking to educate the public
and influence legislation. Gather data, maintain a library, offers referrals
and publish National Right to Life News and the pamphlet, "Challenge to Be
Pro-Life".
Adolescent Parenting
National Organization of Adolescent Pregnancy and Parenting
P.O. Box 2365
Reston, VA 22090
703-435-3948
Organization that aims to strengthen services to adolescent parents and their
children; seeks to influence legislation, and publishes various materials
including the Directory of Adolescent Pregnancy and Parenting Programs.
Adoption
Aid to Adoption of Special Kids
450 Sansome Street
San Francisco, CA 94111
800-232-2751, 415-434-2275
Network of non-profit adoption agencies focusing on adoption of children in
the public welfare system.
Americans for International Aid and Adoption
1370 Murdock Road
Marietta, GA 30062
404-973-5909
Organization interested in aiding children abroad; assists families where
appropriate or arranges for adoptions; publishes newsletter.
Child Welfare League of America
440 First Street, N.W., Suite 310
Washington, D.C. 20001-2085
202-639-2952, 202-638-2952
Organization interested in raising the level of care for children. Provides
information and referrals, does research, maintains library, seeks to
influence legislation, and publishes newsletter and other materials.
Families Adopting Children Everywhere
P.O. Box 28058, Northwood Station
Baltimore, MD 21239
301-256-0410, 301-488-2656
Organization for people and agencies involved in adoption that provides
support and information, conducts research, seeks to influence legislation,
and publishes a newsletter and other materials.
National Adoption Exchange
1218 Chestnut Street, Suite 204
Philadelphia, PA 19107
215-925-0200
An adoption referral service for hard-to-place children, including older,
handicapped or minority children. Operates National Adoption Center,
maintains library, publishes newsletter, videotapes and other materials.
North American Adoption Congress
P.O. Box 44040, L'Enfant Station
Washington, D.C. 20026
206-481-6471
Organization that works as a clearinghouse for adoptees, adoptive and birth
parents, and adoption professionals; serves as a referral service, and
publishes various materials.
North American Council on Adoptable Children, Inc.
1810 University Avenue, Suite S-275
St. Paul, MN 55104
612-644-3036
Organization for groups of adoptive parents and adoption professionals.
Clearinghouse for information, holds seminars and programs, publishes
newsletter and other materials.
National Committee for Adoption
1930 Seventeenth Street, N.W.
Washington, D.C. 20009-6207
202-328-1200, Hotline 202-328-8072
Organization for adoptees, adoptive and birth parents, and adoption
professionals; seeks to influence legislation, maintains a library and
conducts research, publishes materials for professionals and the public.
Organization for United Response
3307 Highway 100 North, Suite 203
Minneapolis, MN 55422
612-535-4829
Organization of adoptive parents that publishes various materials, including
bimonthly magazine.
Affective Disorders
Anxiety Disorders Association of America
6000 Executive Boulevard, Suite 200
Rockville, MD 20852-3883
301-231-9350
Organization for anxiety disorder patients, their families, and medical
professionals involved in their treatment. Supports self-help groups, seeks
to educate public, acts as information clearinghouse. Publishes various print
and audiovisual materials.
Depression After Delivery
P.O. Box 1282
Morrisville, PA 19067
215-295-3994
Organization aimed for women suffering from postpartum depression. Serves as
a information clearinghouse.
Depression and Related Affective Disorders Association
Johns Hopkins Hospital, Meyer 4-181
1601 North Wolfe Street
Baltimore, MD 21205
301-987-5756, 301-955-4647
Association for patients and their families who are concerned about clinical
and manic depression. Offers educational programs, support services and
treatment, and supports research. Publishes quarterly newsletter and various
other materials.
AIDS/HIV
Foundation for Children with AIDS
77 B Warren Street
Brighton, MA 02135
617-783-7300
Foundation dedicated to assist parents of children with AIDS. Offers
information and referrals.
National Pediatric HIV Resource Center
Children's Hospital of New Jersey
15 South 9th Street
Newark, NJ 07107
201-268-8251
The Resource Center provides information and referrals to families who have
children with the HIV virus.
Alcoholism
Mothers Against Drunk Driving (MADD)
511 East John Carpenter Freeway
Irving, TX 75062
214-744-MADD (6233)
National organization consisting of families of drunk-driving victims and
interested others dedicated to promoting public awareness that driving under
the influence is a criminal demeanor. Seeks to educate public and influence
government agencies, supports and encourages support groups, maintains
library. Publishes newsletter and various other materials.
National Association for Children of Alcoholics
31706 Coast Highway, Suite 201
South Laguna, Ca 92677
714-499-3889
Organization of professionals helping children of alcoholics. Serves as an
information clearinghouse, provides referrals for children needing treatment,
aims to strengthen social services for the children of alcoholics. Publishes
newsletter and various other materials.
Asthma and Allergy
Asthma and Allergy Foundation of America
1717 Massachusetts Avenue, Suite 305
Washington, DC 20036
202-265-0265
Organization of people concerned with, and interested in, allergy and asthma.
Provides information, supports research, seeks to educate public. Publishes a
bimonthly newspaper.
Autism
Institute for Child Behavior Research
4182 Adams Avenue
San Diego, CA 92116
714-281-7165
Information Clearinghouse for treatment of autism and other learning and
behavior problems. Provides counseling and makes referrals. Publishes
quarterly newsletter and various other materials.
Birth Defects
Association of Birth Defect Children
3526 Emerywood Lane
Orlando, FL 32806
305-859-2821
Organization seeking to prevent birth defects. Gathers and disseminates
information, offers support to families, seeks to educate the public and
influence government policy. Publishes quarterly newsletter.
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
914-428-7100
Organization dedicated to preventing and treating birth defects. Provides
information and referrals, educational programs on maternal and newborn
health, counseling through local chapters. Publishes numerous print and
audiovisual materials, including booklets for children and information sheets.
Brain Tumors
Brain Tumor Foundation for Children
751 DeKalb Industrial Way
Decatur, GA 30033
414-292-3536
Organization responsible for sponsoring local support groups. Publishes
newsletter for parents of children with brain tumors.
Breast-Feeding
Human Lactation Center
666 Sturges Highway
Westport, CT 06880
Center conducts research, provides consultation for mothers, and promotes
education on breastfeeding and its effects. It maintains a library, publishes
books, and a monthly journal, Lactation Review.
La Leche League International
9616 Minneapolis Avenue
P.O. Box 1209
Franklin Park, IL 60131-8209
708-455-7730, 800-525-3243
International network of women dedicated to promoting and supporting
breast-feeding. Provides training, encourages local support groups, maintains
libraries and resource centers, operates telephone reference service.
Publishes various materials.
Burn Victims
National Burn Victim Foundation
308 Main Street
Orange, NJ 07050
201-731-3112
National foundation dedicated to assisting burn victims. Encourages and
supports self-help groups and educational programs, offers counseling and
special programs for burned children. Seeks to educate public of burn victim
needs.
Cancer
American Cancer Society
1599 Clifton Road, N.E.
Atlanta, GA 30329
800-227-2345, 404-320-3333
Sponsors research, education programs, and support services to cancer patients
and their families. Publishes newsletter, numerous print and audiovisual
materials.
Candlelighters Childhood Cancer Foundation
1901 Pennsylvania Avenue, N.W., Suite 1011
Washington, DC 20006
202-659-5136
The foundation offers support and counseling to children who have cancer and
their families. Provides information on childhood cancer, publishes quarterly
newsletter and various materials.
National Cancer Institute
Office of Cancer Communications
9000 Rockville Pike
Building 31, Room 10A30
Bethesda, MD 20892
800-4-CANCER, 301-496-5583
National institute concerned with cancer research and public policy regarding
cancer. Gathers and disseminates data, provides information to public and
professionals, maintains information on experimental treatments currently
being funded. Publishes numerous print and audiovisual materials.
Cardiovascular Disease
American Heart Association
7320 Greenville Avenue
Dallas, TX 75231
214-706-1179
Organization of individuals affected by heart disease, health professionals
and interested others. Provides information, seeks to educate public, offers
services to heart patients and their families, and encourages mutual-support
groups. Publishes various print and audiovisual materials.
Council on Cardiovascular Disease in the Young
American Heart Association National Center
7320 Greenville Avenue
Dallas TX 75231
214-373-6300
Organization concerned with reducing the incidence of mortality and disability
among children with cardiovascular disease. Encourages research and seeks to
educate public. Publishes various materials.
Cerebral Palsy
United Cerebral Palsy Association, Inc.
7 Penn Plaza, Suite 804
New York, NY 10001
800-872-1827, 212-268-6655
Organization offering services to people with cerebral palsy and related
handicaps. Provides support services, information and referrals. Acts as
advocate, seeks to educate public and change public policy. Sponsors research
and the National Association of Sports for Cerebral Palsy. Publishes various
materials, monograms, and books on communication devices available for people
with cerebral palsy.
Child Abuse
American Association for Protecting Children
c/o American Humane Association
9725 E. Hampden Avenue
Denver, CO 80231
800-227-5242, 303-695-0811
Organization responsible for operating the National Resource Center on Child
Abuse and Neglect, provides information and referral services.
Childhelp U.S.A., Inc.
6463 Independence Avenue
Woodland Hills, CA 91370
800-422-4453, 818-347-7280
Organization responsible for operating the National Child Abuse Hotline.
Offers intervention and counseling, makes referrals, sponsors research, and
seeks to educate public. Publishes various materials.
SHARE, Inc.
P.O. Box 1342
Beverly Hills, CA 90213
213-274-5361
Organization offering special programs for mentally retarded and abused
children. Funds diagnostic and counseling center, sponsors fund-raising
events, and conducts educational programs for infants to school-age children.
Child Advocacy
Children's Defense Fund
122 C Street, N.W., Suite 400
Washington, DC 20001
202-682-8787
Organization that works as an advocate for children and their rights.
Conducts research, provides information service, supports local community
groups, and seeks to influence public policy and legislation. Publishes
newsletter and various other materials.
Childbirth and Delivery
Cesareans/Support, Education and Concern (C/SEC)
22 Forest Road
Framingham, MA 01701
508-877-8266
Organization concerned with cesarean deliveries and preventing unnecessary
cesareans. Offers information on cesarean delivery, makes referrals, and
encourages mutual-support groups. Publishes newsletter and various other
materials.
Childbirth Education Foundation
P.O. Box 5
Richboro, PA 18954
215-357-2792
Foundation primarily concerned with promoting alternatives to traditional
hospital births. Provides advice and information on birthing centers,
certified nurse-midwives, and other similar alternatives. Publishes various
print and audiovisual materials.
International Association for Childbirth at Home
c/o Childbirth Center
P.O. Box 430
Glendale, CA 91209
213-663-4996
Association of medical professionals providing information, educational
programs, and referrals to individuals who desire home childbirths.
International Childbirth Education Association
P.O. Box 20048
Minneapolis, MN 55420
612-854-8660
Organization aimed at answering questions and making referrals regarding
childbirth and breast-feeding. Publishes various print and audiovisual
materials.
Maternity Center Association
48 East 92nd Street
New York, NY 10128
215-369-7300
Organization of midwives and medical professionals devoted to improving
maternity care. Provide information and education; sponsors research.
Publishes quarterly newsletter and various other materials including
Preparation for Childbearing and Newborn Needs.
National Center for Education in Child and Maternal Health
38th and R Streets, N.W.
Washington, DC 20057
202-625-8400
An educational center providing information to the public and professionals
about pregnancy, childbirth, genetic diseases, nutrition, and maternal health.
Encourages parent support-groups, publishes various materials.
Cleft Lip & Palate
American Cleft Palate Association
1218 Grandview Avenue
Pittsburgh, PA 15211
800-242-5338
Association educating patients and their families about sources of treatment
and support for those with cleft palate. Sponsors the National Cleft Palate
Association aimed for the parents of children with cleft lip or palate.
Publishes newsletter and various other materials.
Prescription Parents, Inc.
P.O. Box 426
West Roxbury, MA 02132
617/527-0878
Organization providing support and assistance to parents of children with
cleft lip or plate. Encourages parent support groups. Publishes newsletter
and various other materials.
Colostomy, Ileostomy, or Urostomy
United Ostomy Association
2001 West Beverly Boulevard
Los Angeles, CA 90057
213-413-5510
Organization interested in aiding people who have had colostomy, ileostomy, or
urostomy and for their families. Encourages mutual-support groups, provides
information and referrals, publishes various materials.
Cornelia de Lange Syndrome
Cornelia de Lange Syndrome Foundation
60 Dyer Avenue
Collinsville, CT 06022
800-223-8355, 203-693-0159
Organization aimed for individuals having Cornelia de Lange syndrome.
Provides information to public and medical professionals, counsels families,
and publishes bimonthly newsletter and various other materials.
Cystic Fibrosis
Cystic Fibrosis Foundation
6931 Arlington Road, Room 200
Bethesda, MD 20814
800-344-4823, 301-951-4422
Organization offering support services and referrals to cystic fibrosis
patients and their families. Funds research and the Cystic Fibrosis Medical
Centers. Publishes quarterly newsletters and various other materials.
Dentistry for Children
American Society of Dentistry for Children
211 East Chicago Avenue, Suite 1430
Chicago, IL 60611
312-943-1244
Organization of dental professionals specialized in children's dentistry.
Sponsors research; publishes newsletter and various other materials.
Diabetes
American Diabetes Association
1660 Duke Street
P.O. Box 25757
Alexandria, VA 22314
800-232-3472, 703-549-1500
Organization aimed to improve the well-being of individuals with diabetes and
their families. Provides information and services through local affiliates.
Publishes various materials including specially published booklets for
children.
Juvenile Diabetes Foundation International
432 Park Avenue South, 16th Floor
New York, NY 10016
800-223-1138, 212-889-7575
Organization supporting parents and their diabetic children. Provides
information and services through local chapters, funds research, and publishes
quarterly newsletter and various other materials.
Digestive Disease
American Digestive Disease Society
7720 Wisconsin Avenue
Bethesda, MD 20814
301-223-0179
Organization of medical professionals offering referrals and education
regarding digestive diseases. Provides information and counseling. Publishes
various materials.
National Digestive Disease Information Clearinghouse
9000 Rockville Pike
Box NDDIC
Bethesda, MD 20892
301-468-6344
Federally funded clearinghouse providing information and referral services on
digestive diseases. Publishes brochures and various other materials.
Disabilities
Center on Human Policy
Syracuse University
724 Comstock Avenue
Syracuse, NY 13244-4230
315-443-3851
Organization of individuals devoted to working with handicapped people,
autistic and bilingual disabled children in educational, vocational, and
residential services. Provide information on rights, laws, regulations, and
special programs related to the handicapped; serves as an information
clearinghouse; seeks to influence legislation and public policy. Publishes
various materials.
National Easter Seal Society
70 East Lake Street
Chicago, IL 60601
800-221-6827, 312-726-6200 (Voice), 312-726-4258 (TDD)
Network of societies aiding people with disabilities, providing information
about disabilities and services available to the handicapped. Operates local
rehabilitation centers, seeks to educate public and influence legislation and
public policy, makes referrals. Publishes quarterly newsletter and various
other materials.
National Information Center for Children and Youth with Handicaps
P.O. Box 1492
Washington, DC 20013
800-999-5599, 703-893-6061
Organization devoted to assisting parents with disabled children. Offers
counseling and support, provides information of education and special services
available to handicapped children, aids parents in dealing with public and
private agencies. Publishes various materials.
Down Syndrome
Association for Children with Down Syndrome, Inc.
2616 Martin Avenue
Bellmore, NY 11710
516-221-4700
Organization aimed at assisting children, preschool through youth, with Down
Syndrome. Supports special social, recreational, and educational programs;
seeks to educate public and influence public policy. Publishes bimonthly
newsletter and various materials.
Down's Syndrome International
11 North 73rd Terrace, Room K
Kansas City, KS 66111
913-299-0815
Organization aimed for parents of children with Down syndrome. Promotes
support and counseling among parents, funds research, and referral services.
National Association for Down's Syndrome
P.O. Box 4542
Oak Brook, IL 60521
708-325-9112
Organization devoted to enhancing the lives of people with Down's syndrome.
Offers counseling and support to families, seeks to educate and provide
information to the public and professionals, and encourages research.
Publishes bimonthly newsletter and various other materials.
National Down Syndrome Congress
1800 Dempster Street
Park Ridge, IL 60068-1146
312-823-7550
The Congress serves as a clearinghouse for Down Syndrome information and makes
referrals to local chapters and resources. Provides support and counseling
for parents of children with Down's syndrome. Promotes enhancing the dignity
and personal horizons of people with Down's syndrome.
National Down Syndrome Society
666 Broadway
New York, NY 10012
800-221-4602, 212-460-9330
Organization providing services for families and individuals with Down
Syndrome. Publishes biannual newsletter and various materials.
Education
American Montessori Society
150 Fifth Avenue, Suite 203
New York, NY 10011
212-924-3209
Organization of individuals interested in the Montessori's method of teaching.
Establishes educational standards, provides information and referrals, assists
in setting up new schools and offering accreditation, maintains library.
Publishes quarterly magazine and various other materials.
Association for Childhood Education International
11141 Georgia Avenue, Suite 200
Wheaton, MD 20902
800-423-3563, 301-942-2443
Organization of individuals dedicated to promoting equal educational
opportunity for all children. Seeks to enhance children's rights, encourages
continuous training for educators, strives to enhance children's materials.
Publishes various materials.
Council for American Private Education
1625 I Street N.W., Suite 412
Washington, DC 20006
202-659-0016
Organization involved with private school education, educating public and
influencing government policy. Publishes newsletter and various other
materials.
Council for Exceptional Children
1920 Association Drive
Reston, VA 22091
703-620-3660
Organization providing educational, informational, and support services for
people concerned with the education of exceptional children. Seek to educate
public, maintains information center, influences legislation and public
policy, supports research and increase the services for special need
individuals. Publishes various materials.
National Association for the Education of Young Children
1834 Connecticut Avenue, N.W.
Washington, DC 20009
800-424-2460, 202-232-8777
Organization devoted to high-quality education and activities for children.
Grants accreditation for early childhood educators, seeks to educate public
and influence public policy, offers referrals regarding educational services
and resources. Publishes bimonthly magazine and various other print and
audiovisual materials.
National Association for Year-Round Education
6401 Linda Vista Road
P.O. Box 11386
San Diego, CA 92111
619-276-5296
Organization of individuals devoted to improving the quality of education and
use of school facilities more efficiently by supporting year-round education.
Serves as an information clearinghouse; maintains library; publishes various
materials.
National Association of Private Schools for Exceptional Children
2021 K Street, NW, Suite 315
Washington, DC 20006
202-296-1800
Organization of private schools devoted to offering special programs for
children with special needs. Provide information and referrals; publishes
directory of private schools involved in the program.
National Committee for Citizens in Education
10840 Little Patuxent Parkway, Suite 301
Columbia, MD 21044
800-638-9675, 301-997-9300
Organization consisting of parents and interested others devoted to increasing
parent and community participation in education. Conducts research, acts as
information clearinghouse, operates toll-free number for information and
advice about public school education, offers special programs for single
parents and their children. Publishes various print and audiovisual
materials.
National Congress of Parents and Teachers
700 North Rush Street
Chicago, IL 60611
312-787-0977
Organization consisting of parents, teachers, students, school administrators,
and others dedicated to improving education, health, and safety of children.
Acts as advocate for children's interests; educates public and influence
public policy and legislation. Publishes newsletter and various other
materials.
National Head Start Association
1220 King Street, Suite 200
Alexandria, VA 22314
703-739-0875
Federally funded, locally operated program that provides pre-kindergarten
educational opportunities. Provides seminars and training in early childhood
education; publishes quarterly newsletter and various other materials.
Parent Cooperative Pre-Schools International
P.O. Box 90410
Indianapolis, IN 46290
317-849-0992
Organization involved with parent-run, non-profit cooperative nursery centers
and preschools. Counsels and provides information to cooperatives, makes
referrals, serves as an information clearinghouse. Publishes newsletter and
various other materials.
Reading Is Fundamental
600 Maryland Avenue, S.W., Suite 500
Washington, DC 20560
202-287-3220
Organization dedicated to interest children, preschool through high school, in
reading. Provides services to parents on encouraging home reading and giving
the child the sense of personal choice and ownership of books. Publishes
quarterly newsletter and various other materials.
Endometriosis
Endometriosis Association
P.O. Box 92187
Milwaukee, WI 53202
800-992-3636, 414-962-8972
Organization concerned about endometriosis and its role in infertility.
Provides information and referrals. Publishes newsletter and various other
materials.
Epilepsy
Epilepsy Foundation of America
4351 Garden City Drive
Landover, MD 20785
800-332-1000, 301-459-3700
Organization concerned with preventing and controlling epilepsy and improving
lives of people affected. Seeks to educate public and act as advocate to
influence social policy; provides information and referrals, maintains
National Library and Resource Center on Epilepsy. Publishes newsletter and
various other materials.
Family Planning
National Family Planning and Reproductive Health Association
122 C Street, NW, Suite 380
Washington, DC 20001
202-628-3535
Organization concerned with family planning and reproductive health. Seeks to
influence public policy and acts as advocate; publishes various materials.
Planned Parenthood Federation of America
810 Seventh Avenue
New York, NY 10019
212-541-7800
Organization aimed at providing and distributing information about, and access
to, the full range of birth-control methods available. Sponsors research and
disseminates knowledge about family planning and reproduction. Operates
nationwide network of centers providing education, services, and publishes
various materials.
Family Services
Big Brothers and Big Sisters of America
230 North 13th Street
Philadelphia, PA 19108
215-567-7000
Network of local agencies providing an adult friend for school age children of
single-parent households. Provides counseling and referrals; publishes
newsletter and various other materials.
Center for Surrogate Parenting
8383 Wilshire Boulevard, Suite 750
Beverly Hills, Ca 90211
213-655-1974
Organization of professionals assisting couples in arranging surrogate
parenting. Seeks to influence public policy and legislation, gathers and
disseminates information, provides finalizing of adoption. Publishes various
materials.
Institute for Childhood Resources
210 Columbus Avenue, #611
San Francisco, CA 94133
415-864-1169
Organization of individuals concerned with the development of children. Aims
to educate parents on development, education, parenting, and child care of
children. Maintains library and publishes various materials.
Family Resource Coalition
230 North Michigan Avenue, Suite 1625
Chicago, IL 60601
312-726-4750
Organization consisting of local family-support groups seeking to strengthen
the family. Serves as an information clearinghouse for family resource
programs; seeks to influence public policy and legislation related to families
and child development. Publishes various materials.
Family Service Association of America
11700 West Lake Park Drive
Milwaukee, WI 53224
414-359-2111
Network of community-based agencies devoted to educating families, enhancing
their social and mental health, and representing them in the community.
Maintains library and publishes various materials.
Fatherhood Project
610 West 12th Street
New York, NY 10025
212-222-6700
National clearinghouse providing information on father participation programs.
Encourages fathers' participation in raising children, provides information
and referrals, conducts research and maintains library.
Gay and Lesbian Parents Coalition International
Box 50360
Washington, DC 20004
703-548-3238
Organization for homosexual parents. Provides network of mutual-support
groups, seeks to influence public policy and legislation of rights of
homosexual parents. Publishes newsletter and various other materials.
Grandparents'-Children's Right, Inc.
5728 Bayonne Avenue
Haslett, MI 48840
517-339-8663
Organization concerned with protecting the rights and relationship between
children and their grandparents. Aimed to protect grandparents' visitation
rights, serves as clearinghouse for information, and seeks to influence public
policy and legislation.
Interracial Family Alliance
P.O. Box 16248
Houston, TX 77222
713-454-5018
Organization for interracial families. Provides special support to the
biracial children, encourages public acceptance of interracial families,
maintains library and network listing of interracial family organizations.
Publishes various materials.
National Center for Clinical Infant Programs
2000 14th Street North, Suite 380
Arlington, VA 22201-2500
703-528-4300
Organization of individuals seeking to improve the care of infants and young
children under the age of three and their families. Publishes various
materials.
National Foster Parent Association
226 Kilts Drive
Houston, TX 77024
713-467-1850
National association dedicated to enhancing the care of children in foster
homes. Offers information for foster parents; publishes various materials.
Parents Choice Foundation
P.O. Box 185
Waban, MA 02168
617-965-5913
Organization that is devoted to providing parents and educators information on
children books, television programs, games, toys, movies, records, videos, and
computer software. Publishes quarterly newsletter.
Parents Without Partners
8807 Colesville Road
Silver Spring, MD 20910
800-637-7974, 301-588-9354
Organization providing information and support services to anyone raising
children alone. Gathers information on single parenting and maintains
library, serves as an information clearinghouse. Publishes various materials.
Sibling Information Network
991 Main Street
East Hartford, CT 06108
203-282-7050
Organization of individuals concerned with the needs of siblings of disabled
people. Gathers information, conducts research, offers referrals, serves as a
information clearinghouse. Publishes information newsletter.
Single Mothers by Choice
Gracie Square Station
P.O. Box 1642
New York, NY 10028
212-988-0993
National network supporting women who choose to have a child outside of a
permanent relationship. Encourages and supports local chapters; publishes
newsletter and other various materials.
Stepfamily Association of America, Inc.
602 East Joppa Road
Baltimore, MD 21204
301-823-7570
Network acting as a resource and advocate for stepfamilies and interested
others. Aims to enhance stepfamily relationships, offers referral services,
and publishes various materials.
Fertility
American Fertility Society
2140 11th Avenue South, Suite 200
Birmingham, AL 35205
205-978-5000
Organization that works as a clearinghouse on fertility and infertility.
Provides information and referrals. Publishes monthly journal and various
other materials.
RESOLVE, Inc.
1310 Broadway, Department DM
Somerville, MA 02144-1731
617-623-0744
National self-help group for infertile couples. Makes referrals, provides
counseling, distributes adoption information, and gives emotional support.
Publishes newsletter and various other materials.
Food, Drugs & Pharmaceuticals
Dissatisfied Parents Together
128 Branch Road
Vienna, VA 22180
703-938-3783
Organization made up of parents whose children have had adverse reactions to
vaccines, primarily the DPT vaccine. Provides information and makes
referrals, publishes various materials.
Food and Drug Administration
U.S. Department of Health and Human Services
Office of Consumer Affairs
5600 Fishers Lane
Rockville, MD 20857
301-443-3170
Federal department responsible for answering consumers' questions and inquires
concerning foods, drugs, and pharmaceutical. Provides information on food
labels and additives.
Human Nutrition Information Center
U.S. Department of Agriculture
6505 Belcrest Road
Hyattsville, MD 20782
301-436-8498
The center conducts surveys on food consumption and management, publishes data
on the nutritive content of food and provides information needed to improve
the nutritional quality of American diets. Sponsors research jointly with the
Department of Health and Human Services.
Gifted Children
American Association for Gifted Children
c/o Talent Identification Program
10 West Duke Building
Duke University
Durham, NC 27706
919-684-3847
Organization to assist gifted children in developing their talent and utilize
their gifts in helping others. Publishes various materials.
The Association for the Gifted (TAG)
P.O. Box 115
Sewell, NJ 08080
212-319-9220
Organization of parents and educators working with gifted children.
Establishes educational programs; publishes various materials.
Gifted Child Society
190 Rock Road
Glen Rock, NJ 07452
201-444-6530
The Society assists parents in raising gifted children, serves as an advocate
for special needs of gifted children, sponsors workshop programs, special
preschool programs, and programs for multiethnic gifted children. Provides
clinical support services; encourages formation of parent discussion groups.
Publishes semiannual newsletter and various other materials.
National Association for Gifted Children
4175 Lovell Road, Suite 140
Circle Pines, MN 55014
612-784-344475
National association seeking to develop special programs for the gifted to
fulfill their potential. Provides information to parents and professionals,
publishes quarterly newsletter and various other materials.
Growth Problems
Human Growth Foundation
P.O. Box 3090
Falls Church, VA 22043
800-451-6434, 703-883-1773
Organization of families for children who suffer from growth problems.
Gathers and disseminates information to public and professionals; supports
research. Publishes monthly and quarterly publications along with various
other materials.
Little People of America
P.O. Box 633
San Bruno, CA 94066
415-589-0695
Organization dedicated to helping people of short stature and their families.
Aims to provide mutual support and understanding, works through agencies to
arrange for adoption of dwarf children, encourages and cooperates in medical
research. Publishes newsletter and various other materials.
Health & Fitness
Healthy Mother, Healthy Babies National Coalition
409 12th Street, S.W.
Washington, DC 20024-2188
800-533-8811, 202-863-2458
Organization of networks interested in educating pregnant women on maternal
and child health. Serves as an information clearinghouse. Publishes
quarterly newsletter and various other materials.
Positive Pregnancy and Parenting Fitness
51 Salrock Road
Baltic, CT 06330
800-433-8573, 203-822-8573
Organization seeking to train and educate pregnant women and new mothers on
exercise, stress management, and parenting. Publishes newsletter and provides
mail-order catalogs.
Hearing & Speech
Alexander Graham Bell Association for the Deaf
3417 Volta Place, NW
Washington, DC 20007
202-337-5220
Organization aimed to improve the well-being of individuals with hearing
disorders. Serves as an information clearinghouse for public and
professionals on any hearing problem. Publishes various materials.
American Society of Deaf Children
814 Thayer Street
Silver Spring, MD 20910
301-585-5400
Organization providing information and support to deaf and hearing-impaired
children. Encourages formation of self-help groups, offers special program
for new parents of deaf children, maintains library and disseminates
information relating to families with deaf children. Publishes bimonthly
newsletter and various other materials.
Children of Deaf Adults
Box 30715
Santa Barbara, CA 93130
805-682-0997
Organization acting as a support group for hearing children of deaf parents.
Encourages sharing of experience; seeks to act as advocate for the
hearing-impaired. Publishes quarterly newsletter and other materials.
House Ear Institute
256 South Lake Street
Los Angeles, CA 90057
213-483-4431, 213-484-2642 (Telecommunication Device for the Deaf)
Organization focused on the research and development of new approaches to ear
and hearing disorders. Operates center for deaf children, manages support
groups for parents of deaf children, trains and updates medical professionals,
and maintains library. Publishes quarterly newsletter and various other
materials.
National Association for Hearing and Speech Action
10801 Rockville Pike
Rockville, MD 20852
800-638-8255, 301-897-8682
Organization aimed to provide information and referral services to individuals
with communication disorders. Publishes newsletter and various other
materials.
National Association of the Deaf
814 Thayer Avenue
Silver Spring, MD 20910
301-587-1788
National organization assisting the deaf to achieve their maximum potential
through independent living and acceptance into the community. Protects the
legal rights of deaf people, educates public and influences public policy,
serves as an information clearinghouse, and offers special programs and camps.
Publishes quarterly newsletter and various other materials.
National Center for Stuttering
200 East 33rd Street
New York, NY 10016
800-221-2483, 212-532-1460
Organization assisting families of young children showing early signs of
stuttering and support for others who stutter. Provides information and
treatment for children and adults. Publishes quarterly newsletter and annual
review of published literature.
National Information Center on Deafness
Gallaudet University
800 Florida Avenue, NE
Washington, DC 20002
202-651-5051, 202-651-5052 (Telecommunication Device for the Deaf)
Information clearinghouse for the deaf. Provides information to the public
and professionals on all aspects of deafness and hearing impairments,
including deafness in children. Publishes a directory of programs and
services available to deaf people.
National Stuttering Project
4601 Irving Street
San Francisco, CA 94122
415-566-5324
Organization for children and adults who stutter, their families, and
speech-language pathologist. Provides information and referrals; seeks to
educate public. Publishes monthly newsletter and various other print and
audiovisual materials.
Speech Foundation of America
P.O. Box 11749
Memphis TN 38111
901-452-0995
Organization concerned with individuals having speech disorders. Encourages
research on prevention and treatment of stuttering. Seeks to educate public,
provides information and makes referrals. Publishes various materials.
Hemophilia
National Hemophilia Foundation
The Soho Building
110 Greene Street, Suite 406
New York, NY 10012
212-219-8180
Foundation working to improve the quality of life for individuals who have
hemophilia and related bleeding disorders. Provides support, serves as
information clearinghouse on hemophilia, acts as advocate for increase social
services, and supports research. Publishes quarterly newsletter and various
other materials.
Huntington's Disease
Huntington's Disease Society of America
140 West 22nd Street
New York, NY 10011-2420
800-345-4372, 212-242-1968
Organization for families affected by Huntington's disease. Provides
information and makes referrals; supports research and operates the Brain
Donor program. Publishes newsletter and various other materials.
Hydrocephalus
National Hydrocephalus Foundation
Route One, River Road
Box 210A
Joliet, IL 60436
815-467-6548
Organization aimed at informing individuals affected by hydrocephalus and
their families about services available to them. Provides information and
makes referrals, maintains reference library, and publishes quarterly
newsletter and various other printed and audiovisual materials.
Hyperactive Children
Center for Hyperactive Child Information, Inc.
P.O. Box 66272
Washington, DC 20035-6272
703-920-7495
Organization interested in children with hyperactivity. Provides information
on the medical and educational requirements of hyperactive children.
Publishes and distributes brochures and other materials.
Ileitis and Colitis
National Foundation for Ileitis and Colitis
444 Park Avenue, 11th Floor
New York, NY 10016
212-685-3440
Organization committed to exploring problems from and cure for ileitis and
colitis. Sponsors research, supports mutual-support groups for individuals
and their families, provides information and referrals. Publishes quarterly
newsletter and various other materials.
Immune Deficiency
Immune Deficiency Foundation
P.O. Box 586
Columbia, MD 21045
301-461-3127
Organization concerned with immune-deficiency diseases. Gathers and
disseminates information concerning research and treatment; supports research.
Publishes annual newsletter and various other print and audiovisual materials.
Infant Loss
National Sudden Infant Death Syndrome Foundation
10500 Little Patuxent Parkway, Suite 420
Columbia, MD 21044
301-964-8000, 800-221-SIDS 24 Hour Hotline
Organization devoted to providing counseling and support to families who have
lost children to SIDs. Encourages and supports formation of self-help groups
and parent-to-parent contact; provides information and referrals. Publishes
newsletter and various other materials.
Pregnancy and Infant Loss Center
1421 East Wayzata Boulevard, Room 40
Wayzata, MN 55391
612-473-9372
Organization of parents who have suffered a miscarriage, stillbirth, or infant
death. Provides information and referrals; encourages the formation of
support groups. Publishes newsletter and various other materials.
SHARE
St. Elizabeth's Hospital
211 South Third Street
Belleville, IL 62222
618-234-2415 (ext. 1430)
Network of support groups for families who have lost a baby through early
infant death, stillbirth, or miscarriage. Provides counseling, encourages
support groups, maintains library and information about resources available
for surviving parents and siblings. Publishes newsletter and various other
materials.
Kidney and Urologic Disease
American Kidney Fund
6110 Executive Boulevard, Suite 1010
Rockville, MD 20852
800-638-8299, 301-881-3052
Organization interested in kidney problems. Provides information; supplies
financial aid to qualified patients. Publishes pamphlets dealing with kidney
diseases in children and various other materials.
Cystinosis Foundation
17 Lake
Piedmont, CA 94611
415-834-7897
Organization devoted to supporting families whose children have cystinosis.
Seeks to educate public and medical professionals; supports research.
Publishes quarterly newsletter and various other materials.
National Association of Patients on Hemodialysis and Transplantation
211 East 43rd Street
New York, NY 10017
212-867-4486
Organization of individuals with kidney diseases and their families. Supports
and encourages formation of local mutual-support groups, provides
information, offers special programs such as summer camps for children on
dialysis; maintains directory of international dialysis centers. Publishes
various materials.
National Kidney and Urologic Disease Information Clearinghouse
Box NKUDIC
Bethesda, MD 20892
301-468-6345
Organization acting as an information clearinghouse for kidney and urological
problems. Publishes various materials for medical professionals and public.
National Kidney Foundation
2 Park Avenue, Suite 908
New York, NY 10016
212-889-2210
Organization for individuals with kidney disease, their families and medical
professionals. Provides information and referrals, offers local groups for
patient services, and operates an organ donor program. Publishes quarterly
newsletter and various other materials.
Lateral Sclerosis
Amyotrophic Lateral Sclerosis Association
21021 Ventura Boulevard, Suite 321
Woodland Hills, CA 91364
800-340-2060, 818-340-7500
Organization supporting research for ALS. Provides information and makes
referrals. Publishes newsletter and various other materials.
Learning Disabilities
Association for Children and Adults with Learning Disabilities
4156 Library Road
Pittsburgh, PA 15234
412-341-1515
Organization for individuals with learning disabilities and their families.
Seeks to educate public, encourages local support groups, provides special
program information, and offers referral service. Publishes newsletter and
other various materials.
National Center for Learning Disabilities
99 Park Avenue, 6th Floor
New York, NY 10016
212-687-7211
Organization interested in providing special programs for individuals with
learning disabilities. Seeks to educate public; publishes resource guide.
Orton Dyslexia Society
724 York Road
Baltimore, MD 21204
800-222-3123, 301-296-0232
Organization of individuals concerned with the study, treatment, and
prevention of dyslexia. Promotes research and knowledge share. Publishes
newsletter and other various materials.
Leukemia
Leukemia Society of America, Inc.
733 Third Avenue
New York, NY 10017
212-573-8484
Organization devoted to assisting individuals and their families cope with
leukemia, lymphomas, and multiple myelomas. Provides financial aid, seeks to
educate public, and publishes bimonthly newsletter and various other
materials.
National Leukemia Association
585 Stewart Avenue, Suite 536
Garden City, NY 11530
516-222-1944
Organization committed to fighting leukemia. Funds research; supplies
financial aid to qualified leukemia patients.
Liver Disease
American Liver Foundation
998 Compton Avenue
Cedar Grove, NJ 07009
800-223-0179, 201-857-2626
Organization for individuals with liver diseases and their families. Promotes
research, education, and patient self-help groups. Operates organ donor
program; provides network for parents with children affected by liver disease.
Publishes newsletter and various other materials.
Children's Liver Foundation
14245 Ventura Boulevard, Suite 201
Sherman Oaks, CA 91423
818-906-3021
Organization devoted to providing family support, education, and advocacy for
children with liver diseases. Seeks to educate public, encourages research,
and publishes quarterly newsletter and various other materials.
Lung Disease
American Lung Association
National Headquarters
1740 Broadway
New York, NY 10019
212-315-8700
Organization involved with lung diseases and related conditions. Provides
information and referrals, seeks to educate public. Publishes various
materials.
Lupus
Lupus Foundation of America
1717 Massachusetts Avenue, N.W.
Washington, DC 20036
800-558-0121, 202-328-4550
Organization devoted to supporting lupus patients and their families by
providing a network for patient information and service exchange. Gathers and
disseminates information, supports research, seeks to educate public.
Publishes various materials.
Marfan Syndrome
National Marfan Foundation
382 Main Street
Port Washington, NY 11050
516-883-8712
Organization devoted to supporting, providing information and making referrals
to individuals with Marfan syndrome and their families. Encourages research
and family information exchange. Publishes quarterly newsletter and various
other materials.
Mental Health
American Mental Health Fund
2735 Hartland Road, Suite 335
Falls Church, VA 22043
800-433-5959, 703-573-2200
Organization devoted to mental illness, educating public of warning signs and
providing information on the needs for understanding and getting help.
Supports research; publishes various materials.
National Mental Health Association
1021 Prince Street
Alexandria, VA 22314
703-684-7722
Organization acting as advocate for children with mental illnesses and devoted
to improving care and prevention. Provides emotional support and guidance for
families, supports community centers, educates public and influences
government policy. Publishes various print and audiovisual materials.
Mental Retardation
Association for Retarded Citizens (ARC)
P.O. Box 6109
Arlington, TX 76005
817-640-0204
Organization dedicated to the well-being of the mentally retarded. Develops
employment opportunities, provides counseling and guidance, maintains library.
Seeks to educate public and influence public policy and legislation.
Publishes various materials.
Mental Retardation Association of America
211 East 300 South Street, Suite 212
Salt Lake City, UT 84111
801-571-8011
Association dedicated to improving quality of life for the mentally retarded.
Promotes group homes, seeks to educate public, and influence public policy and
legislation; supports research.
Missing & Exploited Children
Missing Children of America
P.O. Box 670-949
Chugiak, AK 99567
907-248-7300
Organization devoted to assisting in the location of missing children. Seeks
to educate public on the importance of child identification packages;
publishes various materials.
National Center for Missing and Exploited Children
2102 Wilson Boulevard, Suite 550
Arlington, VA 22201
800-843-5678, 703-235-3900
Organization that works as a clearinghouse for parents and agencies searching
for missing children. Seeks to influence public policy and legislation;
publishes various print and video materials.
Mucopolysaccharidoses or Mucolipidoses
National Mucopolysaccharidosis Society
17 Kraemer Street
Hicksville, NY 11801
516-931-6338
Organization devoted to patients having mucopolysaccharidoses or mucolipidoses
and their families. Provides support, networking, public education; makes
referrals and supports research. Publishes newsletter and various other
materials.
Zain Hansen M.P.S. Foundation
1200 Fernwood Drive
P.O. Box 4768
Arcata, CA 95521
707-822-5421
Organization devoted to children with mucopolysaccharidoses and related
disorders and their families. Grants financial aid, supports research, and
serves as an information clearinghouse. Publishes quarterly newsletter and
various other materials.
Multiple Sclerosis
National Multiple Sclerosis Society
205 East 42nd Street
New York, NY 10017
212-986-3240
Organization serving individuals with multiple sclerosis and their families.
Provides information, counseling and referrals; seeks to educate public;
offers community services. Publishes quarterly magazine and various other
materials.
Muscular Dystrophy
Muscular Dystrophy Association
810 Seventh Avenue, 27th Floor
New York, NY 10019
212-586-0808
Organization devoted to muscular dystrophy and related neuromuscular diseases.
Operates nationwide network of diagnostic, research, and treatment clinics.
Provides special services and funding to patients and their families.
Supports research, operates summer camps, seeks to educate public and
influence public policy and legislation regarding the handicapped. Publishes
quarterly magazine and various other materials.
Nannies
International Nanny Association
P.O. Box 26522
Austin, TX 78755
512-454-6462
Organization of nannies, agencies, and nanny training schools. Maintains
placement agencies directory.
Neurofibromatosis
National Neurofibromatosis Foundation
141 Fifth Avenue, Suite 7-S
New York, NY 10010
800-323-7938, 212-460-8980
Organization providing individuals with neurofibromatosis and their families
information on medical, social, and genetic counseling. Offers patient
support, seeks to educate public, makes referrals, and publishes various
materials.
Osteogenesis Imperfecta
Osteogenesis Imperfecta Foundation
P.O. Box 14807
Clearwater, FL 34629-4807
813-855-7077
Organization of individuals with osteogenesis imperfecta and their families.
Gathers and disseminates information, provides parent network, supports
research, seeks to educate public. Publishes quarterly newsletter and various
other materials.
Osteoporosis
National Osteoporosis Foundation
1625 Eye Street, NW, Suite 1011
Washington, DC 20006
202-223-2226
Organization of individuals concerned about and interested in educating the
public about osteoporosis. Provides information and referrals, supports
research, publishes quarterly newsletter and various other materials.
Paget's Disease
Paget's Disease Foundation, Inc.
165 Cadman Plaza East
Brooklyn, NY 11201
718-596-1043
Organization of individuals with Paget's disease, their families, and medical
professionals. Provides educational materials to patients, serves as an
information clearinghouse, encourages research, seeks to educate public, makes
referrals. Publishes newsletters and various other materials.
Pediatric Association
American Academy of Pediatrics
PO Box 927
Elk Grove Village, IL 60007
708-228-5005, 800-433-9016 (nationwide), 800-421-0589 (in IL)
The AAP is an organization of 44,000 pediatricians dedicated to the health,
safety, and well-being of infants, children, adolescents, and young adults.
The Academy develops policy, does extensive research, and provides numerous
publications and audio-visual resources.
Perinatal Health Care
National Perinatal Association
101-1/2 South Union Street
Alexandria, VA 22314-3323
703-549-5523
Organization interested in educating parents about perinatal health care.
Provides information and makes referrals to the public. Publishes newsletter.
Phenylketonuria (PKU)
PKU Parents
8 Myrtle Lane
San Anselmo, CA 94960
415-457-4632
Support organization for families who have children with phenylketonuria
(PKU). Offers information, encourages exchange of experiences, publishes
quarterly newsletter.
Premature Infants
Parent Care, Inc.
101-1/2 South Union Street
Alexandria, VA 22314
703-836-4678
Organization devoted to parents of premature or high-risk infants. Encourages
mutual support groups, maintains library, seeks to educate public. Publishes
newsletter and other various materials.
Parents of Prematures
P.O. Box 3046
Kirkland, WA 98083
206-283-7466
Organization for parents of infants born prematurely or who have been
hospitalized after birth. Encourages support groups, provides counseling and
emotional support, publishes monthly newsletter.
Psoriasis
National Psoriasis Foundation
6443 SW Beaverton Highway, Suite 210
Portland, OR 97221
503-297-1545
Organization for individuals with psoriasis and their families. Offers
physician referrals, supports self-help groups for parents, provides a Pen Pal
Club for children, serves as an information clearinghouse. Publishes various
materials.
Rare Disorders
National Organization for Rare Disorders
P.O. Box 8923
New Fairfield, CT 06812
203-746-6518
Organization of individuals and health professionals interested in rare
disorders. Compiles and disseminates information, makes referrals, and
monitors availability of medicines for rare disorders under the Orphan Drug
Act. Publishes quarterly newsletter.
Reye's Syndrome
National Reye's Syndrome Foundation
426 North Lewis
P.O. Box 829
Bryan, OH 43506
800-233-7393, 419-636-2679
Organization devoted to families with children who have had Reye's syndrome.
Serves as an information clearinghouse, encourages support groups, seeks to
educate and encourage government funding of research, offers counseling.
Publishes bimonthly newsletter and various other materials.
Safety
Consumer Product Safety Commission
Washington, DC 20207
800-638-2772
Government agency dedicated to the safety of consumers. Advises parents of
toy and furniture recalls; answers questions and inquiries; publishes numerous
materials.
National Child Safety Council
4065 Page Avenue
P.O. Box 1368
Jackson, MI 49204-1368
800-222-1464, 517-764-6070
National council providing safety educational materials to parents, educators,
and interested others. Publishes numerous materials geared towards children.
National Safety Council
444 North Michigan Avenue
Chicago, IL 60611
312-527-4800
Nationwide organization promoting safety in all areas of life. Seeks to
educate public on accident prevention. Maintains library; publishes quarterly
newsletter and various print and audiovisual materials.
Scoliosis
National Scoliosis Foundation, Inc.
93 Concord Avenue
P.O. Box 547
Belmont, MA 02178
617-489-0888
Organization dedicated to educating the pubic of potential health problems
associated with abnormal spinal curvatures. Encourages screening programs in
schools, funds and develops early detection programs and treatment. Publishes
semiannual newsletter and various other print and audiovisual materials.
Skin Disorders
Foundation for Ichthyosis and Related Skin Types
P.O. Box 20921
Raleigh, NC 27619-09221
919-782-5728
Organization for individuals with ichthyosis and related skin disorders.
Encourages support groups, gathers and disseminates information, seeks to
educates public. Publishes bimonthly newsletter.
Sleep Disorders
American Narcolepsy Association
P.O. Box 1187
1139 Bush Street, Suite D
San Carlos, CA 94070
800-222-6085, 415-591-7979
Organization of individuals suffering from narcolepsy or interested in sleep
disorders. Supports self-help groups, provides information and referrals,
seeks to educate public. Publishes quarterly newsletter and various other
materials.
Spina Bifida
Spina Bifida Association of America
1700 Rockville Pike, Suite 540
Rockville, MD 20852
800-621-3141, 301-770-7222
Association encouraging the care, treatment, and education of individuals with
spina bifida and their families. Supports and encourages formation of local
chapters, seeks to educate public, aids in the arrangement of adoptions;
supports research on causes, treatments and technical aid. Publishes
newsletter and various other materials.
Spinal Cord Injury
National Spinal Cord Injury Association
149 California Street
Newton, MA 02158
800-962-9629, 617-964-0521
Organization serving as an information clearinghouse for individuals
interested in spinal-cord injuries and self-help for patients and families.
Makes referrals, provides special services, publishes newsletter and various
other materials.
Spinal Muscular Atrophy
Families of S.M.A.
P.O. Box 1465
Highland Park, IL 60035
708-432-5551
Organization of individuals concerned with spinal muscular atrophy and other
related diseases. Provides referral service; maintains resource library,
offers family network and support. Publishes newsletter and various other
materials.
Tay-Sachs Disease
National Tay-Sachs & Allied Diseases Association
385 Elliot Street
Newton, MA 02164
617-964-5508
Organization devoted to families with children suffering from Tay-Sachs or
related diseases. Supports formation of self-help groups, provides
information and education, makes referrals. Publishes newsletter and various
other materials.
Terminally Ill Children
Children's Hospice International
1101 King Street, Suite 131
Alexandria, VA 22314
800-242-4453, 703-684-0330
Organization providing a support network for families of seriously ill
children and families who have lost a child. Serves as an information
clearinghouse.
Make-a-Wish Foundation of America
4601 North 16th Street, Suite 205
Phoenix, AZ 85016
602-234-0960
Organization dedicated to granting a wish to terminally ill children under the
age of eighteen. Publishes quarterly newsletter and various other materials.
Starlight Foundation
10100 Santa Monica Boulevard, Suite 785
Los Angeles, CA 90067
213-208-5885
Organization dedicated to granting a wish to terminally or chronically ill
children.
Sunshine Foundation
4010 Levick Street
Philadelphia, PA 19135
215-335-2622
Organization dedicated to granting a wish to terminally or chronically ill
children and their families.
Trisomy 18/13 and Related Disorders
Support Organization for Trisomy 18/13 and Related Disorders
5030 Cole
Pocatello, ID 83202
208-237-8782
Support organization for families who have children with trisomy 18/13 disease
or related disorder. Publishes bimonthly newsletter and various other
materials.
Turner's Syndrome
Turner's Syndrome Society
York University, Administrative Studies
4700 Keele Street, Room 006
Downsview, Ontario M3J 1P3
Canada
416-736-5023
Organization supporting families of children with Turner's syndrome. Gathers
and disseminates information, seeks to educate public, makes referrals.
Publishes quarterly newsletter and various other print and audiovisual
information.
Twins & Triplets
National Organization of Mothers of Twins Clubs, Inc.
12404 Princess Jeanne, N.E.
Albuquerque, NM 87112-4640
505-275-0955
Network of parents with twins and other multiple births seeking to educated
others in aspects of raising twins and encouraging the individuality of each
twin. Aims to educate public, maintains library, and aides research.
Triplet Connection
2618 Lucile Avenue
P.O. Box 99571
Stockton, CA 95209
209-474-3073
Network of mutual-support groups for families expecting and raising triplets.
Assists parents-to-be, encourages sharing of information and experiences,
operates Tender Hearts program for mothers of lost ones. Publishes
newsletter.
Visually Impaired
American Council of the Blind
1010 Vermont Avenue, NW, Suite 1100
Washington, DC 20005
800-424-8666, 202-393-3666
Organization for people who are blind or visually impaired, their families,
and interested others. Provides information and makes referrals. Seeks to
educate public and influence public policy and legislation; records talking
books and maintains library about vision problems. Evaluates and consults on
consumer products, publishes various materials in large type, recording, and
braille.
American Foundation for the Blind
15 West 16th Street
New York, NY 10011
800-AFBLIND, 212-620-2000
Organization for the blind or visually impaired, their families, and
professionals who work with them. Provides information and referrals,
encourages family self-help programs, maintains library and National
Consultant on Early Childhood. Publishes materials in large type, recording,
and braille, as well as basic guide to services for the blind from birth on.
Blind Children's Center
P.O. Box 29159
4120 Marathon Street
Los Angeles, CA 90029
800-222-3566 (except CA), 800-222-3567 (CA only), 213-663-2153
Organization aimed at parents of vision-impaired children. Publishes various
materials.
Blind Children's Fund
230 Central Street
Auburndale, MA 02166-2399
617-332-4014
Organization aimed for parents and professionals working with visually
impaired infants and children up to age seven. Publishes materials for
teaching and stimulating children of different ages and levels of impairment.
International Institute for Visually Impaired, Ages 0-7
1975 Rutgers Circle
East Lansing, MI 48823
517-332-2666
Organization consisting of parents and teachers of vision-impaired children
from birth to age seven. Operates information center for parents and teachers
of visually impaired preschoolers; offers consulting and workshops. Publishes
quarterly newsletter and various other materials.
National Association for Parents of the Visually Impaired
P.O. Box 180806
Camden, NY 13316
800-562-6265, 315-245-3442
Organization devoted to supporting the families of visually impaired children.
Seeks to educate public and influence public policy, provides information and
support, conducts training and workshops. Publishes various print and
audiovisual materials.
National Association for Visually Handicapped
22 West 21st Street
New York, NY 10010
212-889-3141
Organization functioning as an information clearinghouse. Provides services
for the visually impaired, offers counseling to parents of partially seeing
children, maintains library of large-print materials, and publishes various
materials, including large-print newsletters for children and adults.
National Society to Prevent Blindness
500 East Remington Road
Schaumburg, IL 60173
800-221-3004, 312-843-2020
Organization concerned with blindness and preserving sight. Provides
information to public about proper eye care, eye diseases, and treatments;
supports research and operates screening programs. Publishes various
materials.
Parents and Cataract Kids
179 Hunter's Lane
Devon, PA 19333
215-293-1917
Organization consisting of parents whose children are affected by cataracts.
Promotes formation of support groups and provides networking services.
Publishes quarterly newsletter.
Wilson's Disease
Wilson's Disease Association
P.O. Box 75324
Washington, DC 20013
703-636-3014, 703-636-3003
Organization of individuals with Wilson's disease or Menkes' syndrome and
their families. Supports and encourages family-to-family contact, provides
information, makes medical referrals, and provides limited financial aid.
Publishes quarterly newsletter and various other materials.