Useful Resources for Rare Diseases

Connecting individuals and families with trusted information and access to expert care.

Global & National Organizations

Global Genes

Education, advocacy tools, patient stories, and resources.

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Rare Diseases International

Advocates for rare disease policies and patient access worldwide

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National Organization for Rare Disorders (NORD)

U.S. nonprofit providing disease databases, financial aid, and patient support

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EURORDIS

European alliance offering information, support networks, and policy advocacy

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Research & Clinical Trials

Orphanet

Comprehensive database of rare diseases, expert centers, research, and clinical trials worldwide.

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ClinicalTrials.gov

U.S. government–run database of clinical studies, searchable by disease or condition

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World Health Organization (WHO) Rare Diseases Page

Global rare disease information and policy resources.

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Treatment & Care Support

Centers of Excellence

Specialized clinics providing expert diagnosis, care coordination, and treatment guidance.

Genetic Counseling

Support for families affected by inherited rare conditions.

Pain Management & Rehab

Programs supporting neurological or chronic symptom care and recovery.

Mental Health & Caregiver Support

Patient Support Groups

Connect with others who share similar conditions. Many groups are specific to disease types such as migraine, FND, and scleroderma.

Caregiver Support Organizations

Provide emotional support, respite care programs, and helpful resources for parents and families.

National Mental Health Helplines

Helpful for crisis support or regular counseling referrals.

Educational Resources

Newsletters & Webinars

Access rare disease newsletters, webinars, and online communities.

Workshops & Training

Family education workshops and advocacy training programs.

Tracking & Tools

Symptom trackers and healthcare communication tools.

Finding Help Locally

Specialist Clinics

Rare disease clinics and specialists at major medical centers.

Local Nonprofits

Local chapters of rare disease organizations and support groups.

Diagnostic Support

Genetic testing and diagnostic support programs.

Apps & Tools That Can Help

Symptom Tracking Apps

Track symptoms and maintain health journals.

Emergency Profiles

Store seizure plans, triggers, medications, and emergency info.

Community Apps

Connect with others in rare disease and chronic condition groups.

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Find Information

Visit Orphanet or NORD for disease-specific summaries.

Join a Community

Connect with others and reduce isolation.

Track Care

Use journals or apps for appointments.

Ask for Help

Reach out to specialists and support services.