From Sore to Soar

Rare Disorders

Wear Stripes on 2-28-2025

Affecting fewer than 200,000 people in US

7,000 identifiable rare disorders, including 500 types of rare cancers

Resulting in premature deaths

Lifelines, Helplines & Hotlines

Advocacy & Resources

  • APS Type 1 Foundation

    • Website: https://apstype1.org

    • Description: Drives awareness, education and groundbreaking research for APS Type 1.

  • Cure GM1 Foundation

    • Website: https://www.curegm1.org

    • Description: Funds research, advocacy and drug development for GMI - gangliosidosis rare disorder

  • Charge Syndrome Foundation

  • Dup15q Alliance

    • Website: https://dup15q.org

    • Description: An extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region which includes symptoms of hypotonia, motor delays, intellectual disability, autism spectrum disorder (ASD), and epilepsy, including infantile spasms.

  • Emily Ann Griffin Foundation

    • Website: www.eagf.org

    • Description: Touches the lives of families who are not able to afford the costly medical equipment often prescribed to support and enhance a child’s life. This foundation explores funding to keep kids on the move, accessible, safe, communicating, extra support while sitting, healthy and happy.

  • Eurodois

  • EWE Foundation (Edwards Syndrome)

    • Website: https://theewefoundation.org

    • Description: Resources and support to families impacted by Trisomy 18 (Edwards Syndrome), and other rare diseases

  • The Global Foundation for Peroxisomal Disorder

    • Website: https://thegfpd.org

    • Description: Funding research, scientific collaboration, and empowerment through educational programs and support services for Peroxisomal Disorders

  • Issac Foundation

  • The Mighty

    • Website: https://themighty.com

    • Description: Helping people with health challenges better manage their conditions

  • Mast Cell Aware

    • Website: https://www.mastcellaware.com

    • Description: Related information with regards to allergies, anaphylaxis, arthritis, asthma, autism, autoimmune, brain fog, cancer, cardiovascular disease, complex pain syndrome, diabetes,dysautomia/pots, Ehler-Danlos Syndrome, Fibromyalgia, Interstital Cystitis, Hives, Inflammation, Kidney Disease, Lyme Disease, Mastocytosis, Migraines, Mitochondrial Disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Multiple Sclerosis, Obseity & Inflammation, Other, Pediatric Mast Cell Disorders, Psoriasis, Rosacea

  • M4RD.org

  • Myocarditis Foundation:

  • National Organization for Rare Disorders (NORD)

    • Website: https://rarediseases.org

    • Description: Identification, treatment, and finding cures of rare disorders through programs of education, advocacy, research and patient services. Sponsors the Living Rare Live Longer patient and family forum.

  • Pediatric Retinal Research Foundation

    • Website: https://www.prrf.org

    • Description: Funding research in the quest for a cure for children with blinding, retinal diseases (PFVs, ROP, Norrie Disease, Coats’ Disease, CCLRS, FEVR/Other)

  • Rare Diseases International

  • RareX

    • Website: https://rare-x.org

    • Description: Researching global genes, to accelerate treatments for rare disease.

  • Shraban-Deardorff Syndrome Foundation

    • Website: https://www.skdeas.org

    • Description: Identified in 2004, Skraban-Deardorff Syndrome, also known as WDR26-Related Intellectual Disability, is a rare genetic disorder characterized by developmental delay, intellectual disability, seizures and subtle facial differences. Every gene has two copies, and only one copy of the WDR26 gene works properly.

  • Sturge-Weber Foundation (SWF)

    • Website: https://sturge-weber.org

    • Description: To improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through collaboration, education, advocacy, research, and friendly support.

  • United For Scleroderma Foundation

    • Website: https://unitedforscleroderma.org

    • Description: A rare auto immune disease that affects connective tissue and the vascular system. It causes chronic hardening and tightening of the skin and requires a medical diagnosis. While it commonly occurs between the ages of 30 and 50, pediatric form can occur

  • We Wear Stripes

    • Website: https://wewearstripes.com

    • Description: Information about rare disease day a social media campaign and find the filter mosaic zebra

$ Funding Opportunities

* Toolkits & More


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