Genetic and Special Groups
A Child of Promise. A ministry of the First Evangelical Free Church, 1375 Carman Rd, Manchester MO 63021; 636-227-0125. A Child of Promise is a support group aimed at encouraging families to continue their pregnancy following an adverse pregnancy diagnosis. They currently providing individual counseling, and would like to eventually provide a monthly or bi-monthly support group meeting as we have enough families. A Child of Promise is a Christian organization, but is open to those of all faiths and to both mothers and fathers. They have a strong internet support program at http://www.AChildOfPromise.com or email acop@efree.org.
American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), 600 North River Road, Suite 727, Rosemont, IL 60018-4226, (708) 698-1635.
Bebitos Angelitos - Angel Babies of Hinds Hospice. Based in Fresno, CA. Angel Babies is composed of a perinatal hospice program and a bereavement program. Perinatal hospice provides support and anticipatory guidance to families who have a baby diagnosed with a life limiting condition during pregnancy. The program assists families to both welcome and enjoy their baby and when necessary to say good-bye. Information discussed includes normal anticipatory grief reactions; birth planning; creating memories; including other children and family members; birth/death announcements; memorial/funeral service planning, visitations, and much more.The bereavemnt program provides supprt to families that have had a baby die in pregancy or infancey stage and includes individual and couples counseling. Support groups are also available to families to include siblings. Angel Babies Program Coordinator , Hinds Hospice Angel Babies , 1616 West Shaw Avenue B-6 , Fresno, CA 93711; 559.226.5683. Website: http://www.hindshospice.org
Beach Center on Families and Disabilities, 3111 Haworth Hall, The University of Kansas, Lawrence, KS 66045-7516, (913) 864-7600, Fax (913) 864-7605. Offers free newsletters, other publications and fact sheets for a nominal fee. Also maintains a national directory of parent-to-parent programs for families with special needs children, including NICU babies.
Cystic Fibrosis Foundation, 6931 Arlington Rd., Suite 200, Bethesda, MD 20814, (800) 344-4823 or (301) 951-4422. Offers information and referrals to local chapters, support groups, medical information and a newsletter.
Genetic Alliance , 4301 Connecticut Avenue, NW, #404 Washington, DC 20008-2304; (202) 966-5557 FAX: (202) 966-8553 (800) 336-GENE -- Helpline only. Provides educational materials and referrals to consumers regarding most birth defects and genetic disorders. Referrals to parents, genetics professionals, support groups and organizations. Email: alliance@capaccess.org.
Intraventricular Hemorrhage (IVH Parents), PO Box 56-1111, Miami, FL 33256-1111, (305) 232-0381.
March of Dimes Birth Defects Foundation, 1275 Mamaroneck Ave., White Plains, NY 10605, (914) 428-7100. Offers information, referrals and education on many prenatal, pregnancy and child related issues with a focus on healthy mothers and healthy babies.
National Center for Education in Maternal and Child Health, 2000 15th Street North, Suite 701, Arlington, VA 22201-12617, (703) 524-5802, or Fax (703) 524-9335. They publish a resource guide for children with special health needs.
National Down Syndrome Congress, 7000 Peachtree-Dunwoodly Road NE, Lake Ridge 400 Office Park, Building 5, Suite 100, Atlanta GA 30328, (770) 604-9500; 800-232-NDSC. Offers support, literature and education on Down Syndrome.
National Information Center for Children and Youth With Disabilities (NICHCY), Box 1492, Washington, DC 20013-1492, (202) 884-8200; (800) 695-0285; Fax (202) 884-8441; Email: nichcy@aed.org. An information clearinghouse that provides information on disabilities and disability-related issues.
National Organization of Rare Disorders (NORD), PO Box 8923, New Fairfield, CT 06812-8923, (800) 999-6673 or (203) 746-6518. Provides information on rare diseases, a referral network of parents and a data base of information and educational materials.
National Parent to Parent Support & Information System, Inc. (NPPSIS), PO Box 907, Blue Ridge, GA 30513, (800) 651-1151 (for parents), Fax (706) 632-3826. For parents who are experiencing a disability or chronic illness in their family, with over 500 active local parent to parent programs in the US. Also have a web site at: http://www.NPPSIS.org.
National Society of Genetic Counselors, Inc., 401 N. Michigan Avenue, Chicago, IL 60611; Phone: 312-321-6834; Fax: 312-673-6972; E-mail: nsgc@nsgc.org. Most practicing genetic counselors are members. Makes referrals to genetic counselors and has patient educational materials on genetic counseling and some common disorders. Only accepts requests for information in writing.
S.O.F.T. (Support Organization for Trisomy 18, 13 & related disorders), USA, c/o Barb Vanherreweghe, 2982 South Union Street, Rochester, NY 14624; (716) 594-4621 or (800) 716-SOFT (7638). Dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders.
Spina Bifida Association of America, 4590 MacAurthur Boulevard NW, Suite 250, Washington DC 20007-4226, (800) 621-3141or (202) 944-3285; Fax: (202) 944-3295. Offers information referrals to local groups and agencies, a newsletter, literature and advocacy.
Tay-Sachs National & Allied Diseases Association, 2001 Beacon Street, Suite 204, Brighton, MA 02135; 800-906-8723; Fax: 617-277-0134. . Offers referrals, testing information and literature.