Find patient organizations that provide support, resources, and community for rare disease patients and families.
RDCP:PAG0000228
Creating a community for those affected by 17q12 syndromes while raising awareness and encouraging research.
RDCP:PAG0000001
To support families affected by 3q29 deletion and duplication syndromes through advocacy, research, and community building.
RDCP:PAG0000013
To support families affected by ADCY5-related movement disorder, encourage research, and collect information about this rare genetic condition.
RDCP:PAG0000015
RDCP:PAG0000008
The ALS Association is the only national nonprofit organization fighting ALS on every front.
RDCP:PAG0000023
RDCP:PAG0000024
RDCP:PAG0000249
To spread awareness of abetalipoproteinemia and related disorders, encourage research, find treatments, and advocate for patient needs.
RDCP:PAG0000250
To motivate patients, friends, family and the medical community to join in advocacy and raising of awareness in hopes of finding the causation and cure of Achalasia.
RDCP:PAG0000002
To fund research and promote public awareness of Pompe disease (Acid Maltase Deficiency).
RDCP:PAG0000251
To provide an emotional and communal support network for people touched by Acromegaly, offering medical information on surgery, medication, radiation, and post diagnosis support.
RDCP:PAG0000252
To support individuals and caregivers affected by adrenal insufficiency, empowering them with education, resources, community building, and legislative advocacy.
RDCP:PAG0000014
To educate and empower the Hispanic community about rare diseases, providing culturally responsive resources, emotional support, and guidance.
RDCP:PAG0000253
To mobilize resources, facilitate connections, promote unity, and advocate for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.
RDCP:PAG0000016
RDCP:PAG0000017
RDCP:PAG0000018
RDCP:PAG0000254
To provide support and information to people with Behçet's Disease and their families and to educate the medical community about Behçet's Disease.
RDCP:PAG0000019
RDCP:PAG0000012
The ASF exists to advance the awareness and treatment of Angelman syndrome through education and research.