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Where Can I Find Information If My Child Has An Extremely Rare Condition?

Matching groups provide parent-to-parent matching based on children's disabilities and, in some cases, other unique family situations. Most maintain ongoing contact with other groups worldwide. If your child has an extremely rare condition or a unique combination of disabilities, you may want to contact one of these groups.


 Numbers | Email | Websites
Alliance of Genetic Support Groups
www.geneticalliance.org
(800) 336-4363

Association of Birth Defect Children
(24-hour registry line)
 www.birthdefects.org

(800) 313-2232
CHASER: Congenital Heart Anomalies- Support, Education, &Resources
 www.csun.edu/~hfmth006/chaser/
(419) 825-5575

Chromosome Deletion Outreach, Inc.
www.chromodisorder.org/

(561) 395-4252
MAGIC Foundation for Children's Growth
www.magicfoundation.org
(800) 362-4423
United Mitochondrial Disease Foundation
www.umdf.org
(412) 793-8077
MUMS: Mothers United for Moral Support
www.netnet.net/mums/l

(920) 336-5333

(toll-free for parents only) (877) 336-5333

National Organization for Rare Disorders (NORD)
www.rarediseases.org
(800) 999-6673

Nat'l Tay-Sachs & Allied Diseases Association
 www.ntsad.org

(800) 906-8723

The Resource Foundation for Children with Challenges

www.specialchild.com

 
Search & Respond c/o Exceptional Parent
 www.eparent.com
(201) 489-4111


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WarmLine Family Resource Center | 1010 Hurley Way, Suite 290, Sacramento, CA 95825
tel: (916)-922-9276 or (800)-660-7995 :: fax: 916-922-9341 | Monday through Friday 9am - 4pm
email: warmline@warmlinefrc.org

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The WarmLine is a public benefit, 501(c)(3) nonprofit organization.