International coalition representing 600 consumer and professional organizations.
Patient Organizations
This listing is not intended to be a comprehensive listing of all not-for-profit health agencies in the United States, nor does inclusion of any particular organization imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information useful to individuals nationally, and for this reason we have not included many local groups that offer valuable assistance to patients and their families within a limited geographic area. Many of the organizations listed in this directory have information available to the public on the World Wide Web.
Provides worldwide awareness and better quality of life for people diagnosed with Adult Refsum Disease. Supports research, education, awareness, and advocacy.
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The mission of the GFPD is to help children and families faced with a Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder (PBD-ZSD) diagnosis and to assist family members and professionals
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Nonprofit charity whose mission is to raise funds to support the development of a treatment and cure for GAN, and to be the resource for doctors, scientists and families world-wide.
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Nonprofit organization dedicated to reducing death and disability due to heart rhythm disorders, such as atrial fibrillation.
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Non-profit basic science organization dedicated to the cure of genetic disease. All publicly donated funds are directed toward the support of biomedical research.
Dedicated to raising awareness, funding innovative research and improving quality of life for those with Charcot-Marie-Tooth (CMT) disorder, their families, and caregivers by offering medical infor
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Nonprofit organization that encourages scientific exchange among scientists and provides pilot grants for promising scientific and clinical research related to human herpesvirus 6 (HHV-6).
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Nonprofit that raises awareness and supports research to find treatments and cures for lysosomal disorders.