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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
