Rare Diseases

• NORD (National Organization for Rare Disorders) Rare Disease Database • GARD (Genetic and Rare Diseases Information Center) • Rare Diseases International • National Human Genome Research Institute Rare Diseases FAQ

Pain Management

• U.S. Pain Foundation • Pain Resource

Myasthenia Gravis

• MG Community from Myasthenia Gravis Foundation of America • MG United

Elhers-Danlos Syndrome

• Community Resources from The Ehlers-Danlos Society • The Mighty’s Guide to Ehlers-Danlos Syndrome Resources • I think I Might have EDS (TikTok)

Ectodermal Dysplasias

• National Foundation for Ectodermal Dysplasias • RareDiseases.org: The ectodermal dysplasias (EDs) are a heterogeneous group of nearly 100 inherited disorders characterized by anomalies in at least two of the structures derived from the embryonic ectoderm, with at least one involving the skin appendages (hair, nails, sweat glands) or teeth. Other tissues derived from the primitive ectoderm that can be involved in EDs include the mammary glands, adrenal medulla, central nervous system, inner ear, retina, optic lens, pigment cells and branchial arch cartilages.

Mesothelioma Doctors

• Mesothelioma is a rare and complex disease that requires expert medical care. Thankfully, experienced mesothelioma doctors can create treatment plans to help patients live longer. Patients should choose a mesothelioma specialist based on the doctor’s experience with their mesothelioma type, stage, cell type, and prognosis. Learn more about finding a top mesothelioma specialist near you. • Mesothelioma in Women Zebra Hearts Foundation Brochure • Brochure Tips and Product Recommendations • Wheelchair Van Resources • Tips, tricks, hacks, and product recommendations Facebook Groups • Zebra Hearts Foundation Community - We strive to connect families living with rare diseases to share knowledge and experiences to help and encourage others. • Buy, Sell, Trade Mobility Aids provided by the Zebra Hearts Foundation. • EveryLife Foundation for Rare Diseases - Empowers the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures. Arts Midwest • Arts Midwest - art group is for artists who want connect with other artists with disabilities. o The Ideas Hub is a collection of curated articles and tools that simplify complex concepts for creative leaders in relatable ways. o Filling the Well is a podcast created to nourish, provoke, and inspire artists and arts leaders The Accessibility Center helps arts and cultural organizations in making programming, services, and communications more accessible.