Partner Organizations

Global DARE Foundation believes strongly in partnering with other patient support and advocacy organizations to advance its mission faster.

United Luekodystrophy Foundation

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

Foundation Fighting Blindnesss

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

Global Genes

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

National Organization for Rare Disorders

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.


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.

Retina UK

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

Metabolic Support UK

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

Leukodystrophy Resource and Research

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

Cambridge Rare Disease Network (CRDN)

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.

Patient Worthy

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

First Foundation for Ichthyosis & Related Skin Types

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

Haystack Project

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.


Findacure is a charity that is bringing the rare disease community together.

Global Leukodystrophy Initiative

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.

Genetic Alliance

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

Contact us

P.O.Box 865

Windham, Maine 04062

United States

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EIN: 84-3343395

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This website is not designed to diagnose, advise or provide medical opinions, treatment or services. It is for general knowledge purposes only. Please consult a licensed medical professional with all questions and concerns regarding a medical condition. 

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