Rady Children’s Hospital Diabetes Center Comprehensive care for children with Diabetes, including an American Diabetes Association recognized education program; education from CDE (Certified Diabetes Educator) nurses and dietitians in all areas regarding Diabetes care; support for managing Diabetes at home, school and other activities. 858-966-4032 www.rchsd.org
DOWN SYNDROME Down Syndrome Association (DSA) of San Diego Family Support Network across the lifespan: information, resources and referral services, education and social events, advocacy and public policy initiatives. Specialized services: peer/parent support, pre/postnatal consults, family support groups (English/Spanish), social groups and lending library. 9245 Sky Park Ct. #130 SD, 92123 619-594-7389 www.dsasdonline.org DS Action San Diego based organization dedicated to helping children with Down Syndrome. 619-694-4615 www.dsaction.com Gigi’s Playhouse Down Syndrome Achievement Center Provides free educational and therapeutic-based programing to individuals with Down Syndrome and support for their families. Christ Lutheran Church 4761 Cass St., SD, 92109 858-333-5743 www.gigisplayhouse.org/ sandiego National Down Syndrome Society Education, research and advocacy for those with Down Syndrome and their families. 800-221-4602 www.ndss.org
Pediatric Down Syndrome Center Serves as a resource to medical professionals and strengthens the social network for families, improving the consistency of care for children under 5 with Down syndrome. Offers coordinated assessments, connections to resources, education and advocacy. Now offering clinics for older children. 7920 Frost St. #200 SD, 92123 858-966-5840 www.rchsd.org/programsservices/down-syndromecenter Reece’s Rainbow Down Syndrome Adoption Grant Foundation (See listing under Foster Care and Adoptive Services)
DYSLEXIA The International Dyslexia Association Tools, info and resources for those with Dyslexia. San Diego Branch 12285 Oak Knoll Rd. Poway, CA 92064 619-295-3722 www.dyslexiasd.org Learning Ally Serves students and lifelong learners who cannot read standard print due to blindness, visual impairment, Dyslexia, or other learning disabilities by providing more than 65,000 digitally recorded textbooks and literature titles. 800-221-4792 www.learningally.org
EPILEPSY Epilepsy Foundation of San Diego Offers parent support group, children’s expressive art group and other resources. 2055 El Cajon Blvd., SD, 92104 619-296-0161 www.epilepsysandiego.org Talk About It! Website dedicated to understanding that Epilepsy is a naturally occurring
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disability. Resources for coping, medication information and support are discussed in a matter-of-fact manner. www.talkaboutit.org
FRAGILE X Fragile X Center of San Diego Provides information for families and professionals including family support, improving awareness of Fragile X, promoting research and increasing identification of the syndrome. 877-300-7143 Spanish: 760-434-6290 www.fragilexsandiego.org FRAXA Research Foundation Nonprofit organization run by parents whose mission is to find treatments and a cure for Fragile X by funding the most promising research. 978-462-1866 www.fraxa.org
GUILLAIN-BARRE SYNDROME Guillain-Barre Syndrome Foundation International (GBS/ CIDP) Nonprofit that brings together professionals and families for research, understanding and support. 866-224-3301 www.gbs-cidp.org
LUPUS Lupus Foundation of America National center for research and advocacy for those with Lupus. 800-558-0121 www.lupus.org Lupus Foundation of Southern California Offers support groups, resources and insurance advice for those living with Lupus. 4699 Murphy Canyon Rd. SD, 92123 858-278-2788 www.lupussandiego.com
SPINAL CORD INJURIES (See Brain and Spinal Cord Injuries)
TOURETTE SYNDROME Tourette Association of America Southern California Chapter Resources, support, camps and recreational opportunities for those living with Tourette Syndrome. 855-487-2762 www.tsa-socal.org
MISCELLANEOUS ILLNESSES AND ANOMALIES 9pMinus/Alfi’s Syndrome: Chromosome 9pMinus Network Website with resources for individuals with Monosomy 9p. 920-931-2644 www.9pminus.org 11Q Research and Resource Group Support, research and yearly conference to support those with any abnormalities of the 11th chromosome. www.11qusa.org Aicardi Syndrome Foundation Support, resources and registry for people with this rare neurological disorder. www.aicardisyndrome foundation.org American Cleft PalateCraniofacial Association (ACPA) Resources for those with cleft lip and palate including Cleftline Bears (teddies with cleft stitches), educational materials, grants and scholarships. 800-242-5338 www.cleftline.org Angelman Syndrome Foundation Resources, research and info for those living with AS. 800-432-6435 www.angelman.org The Association for X and Y Chromosome Variations (AXYS) Dedicated to providing information,
