The organization focuses on supporting patients with thalassaemia and other rare anemias by providing resources, education, and advocacy for better healthcare access.

The AADC Research Trust is an international patient advocacy organization supporting children with Aromatic Amino Acid Decarboxylase deficiency (AADCd) by driving research, advancing treatment strategies, and providing resources for families.

The Aarskog Foundation is a Scottish charity that supports children and individuals diagnosed with Aarskog Syndrome by providing resources for healthcare, education, and research.

The AIP BIPOC Network is a nonprofit organization that supports individuals and families navigating autoimmune and chronic illness, focusing on culturally grounded and accessible care for BIPOC communities.

The Allo Hope Foundation empowers, educates, and supports patients affected by alloimmunization and Hemolytic Disease of the Fetus and Newborn (HDFN) through resources, advocacy, and community support.

The Arc of the United States advocates for the rights and inclusion of people with intellectual and developmental disabilities, providing resources and support for their full participation in the community.

The Arc of the Capital Area is a nonprofit organization dedicated to empowering individuals with intellectual and developmental disabilities and their families through case management and innovative programs.

TASH advocates for equity, opportunity, and inclusion for people with disabilities, focusing on those with significant support needs in education, employment, and community living.

The Baker-Gordon Syndrome Foundation supports families affected by Baker-Gordon Syndrome, a rare genetic disorder, by providing connections, advocacy, and research for potential treatments.

The Cockayne Syndrome Foundation Inc. is a nonprofit organization that provides resources, supplies, and information to families affected by Cockayne Syndrome and Trichothiodystrophy, aiming to alleviate the financial burden of caring for children with these rare diseases.

The Duchenne Registry is an online patient-report registry for individuals with Duchenne or Becker muscular dystrophy, providing a platform for patients and families to contribute data for research and improve understanding of these conditions.

The EHE Foundation is dedicated to finding treatments and a cure for epithelioid hemangioendothelioma (EHE) by advancing research and fostering collaboration among patients, researchers, and clinicians.

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The Fibrolamellar Registry is dedicated to advancing research into fibrolamellar carcinoma by pooling patient stories and data to improve diagnostics and treatments.

The Gould Syndrome Foundation is dedicated to empowering and improving the lives of individuals affected by Gould Syndrome, a rare genetic disorder, through awareness, advocacy, education, and supporting research.

The Healing NET Foundation focuses on optimizing the care of individuals with neuroendocrine cancer through education and collaboration among healthcare providers, patients, and caregivers.

Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through educational opportunities, support programs, and resources tailored to their needs.

The Lambert-Eaton LEMS Family Association supports individuals and families affected by Lambert-Eaton Myasthenic Syndrome and other rare diseases by providing resources, programs, and community engagement.

The LCC Foundation supports individuals affected by Leukoencephalopathy with calcifications and cysts (LCC or Labrune Syndrome) by advancing research and raising awareness for treatments.

The Mast Cell Disease Society (TMS) provides resources, community support, and education for individuals living with mast cell diseases.