Rare Disease Resource Directory

A gentle guide to healthcare, advocacy, research, and support resources for rare disease communities.

💗 Created by Young Advocates for Rare Diseases
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NORD

National Organization for Rare Disorders provides patient support, advocacy, and education.

Support

GARD

Genetic and Rare Diseases Information Center provides trusted rare disease information.

Education

Clinical Trials

Search medical research studies and clinical trials for rare disease treatments.

Research

Orphanet

International rare disease database with information about diseases and research.

Research

Global Genes

Resources, advocacy, and community support for rare disease families.

Support

EveryLife Foundation

Works to accelerate rare disease treatment development.

Research

Treatment Resources

Explore treatment information and patient resources.

Treatment

YARD

Young Advocates for Rare Diseases is a youth organization that reduces the social and medical gaps for rare disease communities. Please support our Instagram page.

Support