General
National Organization for Rare Disorders (NORD)
Wilhelm Foundation (for undiagnosed conditions)
Autism
ARI (Autism Research Institute)
Mast Cell Disorders
The Mastocytosis Society
is a non-profit organization dedicated to supporting patients affected by Mastocytosis and Mast Cell Activation Disorders as well as their families, caregivers and physicians through research, education and advocacy.
Mast Cell Action was founded in 2016 to offer support to the mast cell disease community, their families, doctors and researchers. To raise awareness of disorders resulting from mast cell activation, increase vital research in this area and strive for better diagnostics and treatment.
MPN (Myeloproliferative Neoplasms) Research Foundation
Connective Tissue Disorders
The Ehlers-Danlos Society
Autonomic Dysfunction
Dysautonomia Support Network
GI Disorders
The Oley Foundation
Striving to enrich the lives of those living with home intravenous
nutrition and tube feeding through education, advocacy, and networking.
PACIFHAN (Patient Organizations for Chronic Intestinal Failure and Home Artificial Nutrition)
To work together to promote the international sharing of information and
resources to improve the quality of life of Home Artificial Nutrition
patients.
American Partnership for Eosinophilic Disorders (APFED) Working diligently to advocate for increased funding, state and federal legislation, and medical coding to benefit those affected by eosinophilic disease.
The Digestive Disease National Coalition (DDNC)
Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT)
International Foundation for Functional Gastrointestinal Disorders
Other
PANDAS Network
National Organization for Albinism and Hypopigmentation (NOAH)
Hermansky-Pudlak Syndrome Network
Trauma Research Foundation
Dedicated to increasing awareness and research regarding the negative health impacts of indoor air quality, often as a result of water damage and mold.