External Organizations

Eurordis (Europe)

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 905 rare disease patient organizations from 72 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.


Melanoma Patient Network Europe is a European Patient Network that educates and advocates for research and access in Melanoma, including rare pediatric melanoma.

Global Skin

Global Skin is a unique global alliance, committed to improving the lives of patients worldwide. We nurture relationships with members, partners and all involved in healthcare – building dialogue with decision-makers around the globe to promote patient-centric healthcare. GlobalSkin’s work is founded on three pillars: research, advocacy, and support.


NORD National Organisation for Rare Disorders (USA) 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.

ICORD (globally)

ICORD is an International Society for all individuals active in rare diseases and/or orphan drugs, including health care, research, academic, industry, patients, patient groups, regulatory authorities, health authorities, and public policy professionals.

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