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Search 1,288 verified patient advocacy organizations — the community, research advocates, and family-support groups working on rare diseases.
Kisho provides public health information only — not medical advice. Always consult your healthcare provider.
UMDF supports individuals affected by mitochondrial diseases through education, research, and advocacy, while also maintaining a patient registry and providing resources for families.
United MSD Foundation is a nonprofit organization dedicated to raising awareness and funding research for Multiple Sulfatase Deficiency (MSD), while providing support and resources to affected families.
United Spinal Association empowers and advocates for people with spinal cord injuries/disorders and all wheelchair users to achieve their highest quality of life through various support services and resources.
The U.S. Access Board is a federal agency that advances accessible design standards and guidelines in alignment with the Americans with Disabilities Act and other federal laws.
The United States Adult Cystic Fibrosis Association (USACFA) provides support, information, and encouragement to adults with cystic fibrosis through community outreach programs and the publication of the CF Roundtable magazine.
United Way of Greater Houston provides financial stability services, early childhood and youth development programs, and health care programs to help families achieve financial security and build sustainable futures.
UTMB is a medical institution focused on patient care, education, and research, serving communities in Texas and beyond.
RDCP:PAG0000235
Uplifting Athletes connects athletes, teams, and organizations with individuals and families impacted by rare diseases, focusing on research, awareness, and creating enriching experiences.
U.R. Our Hope is a non-profit organization that assists individuals and families affected by undiagnosed and rare disorders through education, advocacy, and support.
The US Hereditary Angioedema Association is a non-profit organization that advocates for individuals with Hereditary Angioedema (HAE) and provides resources, education, and support to improve their quality of life.
The Usher III Initiative is dedicated to finding cures for Usher 3 Syndrome, a rare inherited disease that leads to progressive vision and hearing loss.
RDCP:PAG0000236
The Usher Syndrome Coalition is dedicated to supporting individuals and families affected by Usher syndrome, raising awareness, and accelerating research for potential treatments.
ZERO Prostate Cancer is dedicated to supporting individuals affected by prostate cancer through various support groups and resources, aiming to empower patients, partners, and caregivers in their journey.
Vaincre les Maladies Lysosomales is a French patient advocacy organization focused on supporting individuals and families affected by lysosomal diseases through research funding, patient support, and community engagement.
RDCP:PAG0000237
The Vasculitis Foundation provides education, research, and support for individuals affected by vasculitis, a group of rare diseases characterized by inflammation of blood vessels.
Vermont Legal Aid provides free legal assistance to low-income residents facing civil legal issues, including eviction, foreclosure, health care, discrimination, and more.
RDCP:PAG0000238
The Vestibular Disorders Association (VeDA) provides support and resources for individuals affected by vestibular disorders, focusing on education, community support, and coping strategies.
RDCP:PAG0000239
The VHL Alliance works to improve the quality of life and health outcomes for patients with Von Hippel-Lindau (VHL) disease through community building, education, treatment options, and advancements in medical research.
The Vision of Children Foundation is dedicated to funding research to cure hereditary childhood blindness and genetic vision disorders while providing support to affected families.
VISIONS/Services for the Blind and Visually Impaired is a nonprofit organization that provides vision rehabilitation and social services to assist individuals who are blind and visually impaired in leading independent lives.
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