Rady Children’s Hospital - Down Syndrome Center Serves as a resource to medical professionals and strengthens a family’s social network, improving the consistency of care for children under 5 with Down syndrome. Offers assessments, reommendations and case management. 7920 Frost St. #200 SD, 92123 858-966-1700 x246170 www.rchsd.org 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 Parent support group, children’s expressive art group and other resources. 2055 El Cajon Blvd., SD, 92104 619-296-0161 www.epilepsysandiego.org Epilepsy and My Child Toolkit The National Center for Project Access offers helpful information to families with a newly diagnosed child. www.aap.org/en-us/Documents/ Sharing_the_Diagnosis.pdf
Talk About It! Website dedicated to understanding that Epilepsy is a naturally occurring 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 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 National Fragile X Foundation Online access to a community support network and research consortium. www.fragilex.org Our Fragile X World Online resources for families, researchers and practitioners. www.ourfragilexworld.org
GUILLAIN-BARRE SYNDROME Guillain-Barre Syndrome Foundation International (GBS/ CIDP) Nonprofit that brings together professionals and families for research 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 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 Rady Children’s Hospital Tic/Tourette Center Under the direction of movement disorder specialist Dr. Jennifer Friedman, provides state-of-the-art and compassionate care for pediatric and adult patients with tics or Tourette Syndrome. Division of Neurology Nelson Pavilion, Third Flr. 8001 Frost St. SD, 92123 858-966-5819 www.rchsd.org Tourette Association of America Southern California Chapter Resources, support, camps and recreational opportunities for those with Tourette Syndrome. 855-487-2762 www.tsa-socal.org
MISCELLANEOUS ILLNESSES AND ANOMALIES 9pMinus/Alfi’s Syndrome: Chromosome 9pMinus Network 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 Autoimmune Related Diseases Association Fosters and facilitates collaboration of patients, researchers, and doctors in the areas of education, public awareness, research, and patient services. www.aarda.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 with AS. 800-432-6435 www.angelman.org The Association for X and Y Chromosome Variations (AXYS) Dedicated to providing information, connection and support to individuals with one or more extra X or Y chromosomes. 888-999-9428 www.genetic.org Bohring-Opitz Syndrome/ASXL1 Dedicated to mapping those diagnosed with ASXL1 for research, resources, supports and developing best practices. www.bohring-opitz.org Bridge the Gap SYNGAP Education and Research Foundation Parent-run organization raising awareness and searching out treatments for single gene mutations like Fragile X, Angelman, Rett and Phlean-McDermid Syndromes associated with SYNGAP1. www.bridgesyngap.org
flourishing families 2020 • SanDiegofamily.com • SNRFSD.org •
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