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MISCELLANEOUS

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MISCELLANEOUS

9pMinus/Alfi’s Syndrome: Chromosome 9pMinus Network
Website with resources for individuals with Monosomy 9p.
www.9pminus.org

 

Angelman Syndrome Foundation
800-432-6435
www.angelman.org

 

Burn Institute San Diego
8825 Aero Dr. #200
SD, 92123
858-541-2277
www.burninstitute.org

 

Global Genes
One of the leading rare and genetic disease patient advocacy nonprofit organizations in the world. Promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon. Centered on increasing rare disease awareness, public and physician education, and supporting research initiatives to find treatments and cures.
Aliso Viejo, CA
949-248-RARE (7273)
www.globalgenes.org

 

International Bipolar Foundation
Advances research toward the elimination of Bipolar Disorder, provides and enhances care, resources and support services and works to erase the stigma associated with mental illness through education.
8895 Town Centre Dr. #105-360
SD, 92122
858-764-2496
http://ibpf.org

 

International Foundation for CDKL5 Research
www.cdkl5.com

 

International Rett Syndrome Foundation
Funds research for treatments and a cure for Rett Syndrome while enhancing the overall quality of life for those living with it by providing information, programs and services.
800-818-7388
www.rettsyndrome.org

 

National Organization for Rare Disorders
Federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. Committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.
Washington, DC
800-999-6673
www.rarediseases.org

 

Prader-Willi Syndrome Association (PWSA) USA
800-926-4797
www.pwsausa.org

 

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
877-662-7737
www.rsds.org

 

Stickler Involved People
(Stickler’s Syndrome)
316-259-5194
www.sticklers.org

 

Turner Syndrome Society of the United States
800-365-9944
www.turnersyndrome.org

 

Unique
The rare chromosome disorder support group.
www.rarechromo.org

 

 

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