Refsum Deutschland e.V., founded by Kerstin Reichert after her own delayed diagnosis, is Germany’s first patient group for Refsum disease. The group connects patients, builds medical networks, and raises awareness, providing practical support and collaborating internationally to improve resources and knowledge for those affected by Refsum disease.

Rare disease is anything but rare. More than 7,000 rare diseases affect over 300 million people globally. The vast majority are not well understood, and less than 5 percent have approved treatments. Yet worldwide, patients are meeting these challenges head-on. The Rare As One project is committed to uniting these communities in their quest for cures.

ULF's mission is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cure. Global DARE Foundation President is also a Board member of ULF

Since its founding in 1971, the Foundation Fighting Blindness has been dedicated to funding innovative research to find preventions, treatments, and cures for inherited retinal degenerative diseases that lead to blindness and affect more than 10 million people in the United States

Retina UK support peoples affected by inherited progressive sight loss and invest in medical research to ensure that people can lead a fulfilling life

Our shared research infrastructure supports collection and analysis of robust clinical data and biological specimen to pave the way for transformative therapeutic trials across the leukodystrophies.

Global Genes mission is to connect, empower and inspire the rare disease community. Learn more about our events, resources and communities. Global DARE Foundation is a Rare Foundation Alliance member of Global Genes

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Global DARE Foundation is a member of NORD.

Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone

Cambridge Rare Disease Network (CRDN) is a charity building a vibrant community to address the unmet needs of those living with rare conditions, their families and the professionals who work with them. Our vision is for a united voice underpinning the development of services and treatments.

The mission is to maximize Health Care Resources, advance the world’s leading Research.

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 924 rare disease patient organisations in 72 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.

Patient Worthy® is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike

First's mission is to improve lives and seek cures for those affected by ichthyosis and related skin types.

The Haystack Project is committed to the Rare and Ultra Rare Disease Community. It brings together Innovators, Patients and Caregivers to educate and advocate for policies that recognize the unique circumstances of extremely rare conditions and treatments.

Genetic Alliance engages individuals, families, and communities to transform health.

Metabolic Support UK is the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients and families worldwide