Join our global community and connect with people working to improve understanding, support and collaboration across rare diseases.
Patient Membership is for people living with a rare disease, including those with a confirmed diagnosis, those awaiting diagnosis and those still searching for answers.
As a Patient Member, you can share your lived experience, explore relevant research and participation opportunities, and contribute your perspective to discussions about diagnosis, treatment and care.
You can complete your profile to indicate your interests, experience and preferred ways of participating. Sharing personal health information and taking part in opportunities are voluntary.
Explore articles, educational resources and developments in rare disease research and healthcare.
Become part of an international community of patients, carers, advocates, researchers and healthcare professionals.
Explore opportunities to contribute your knowledge, experience and perspectives to relevant activities.
Indicate your interest in research, discussions, events and other opportunities where available.
You remain in control of the information you choose to share. Participation in research, speaking engagements and other opportunities is voluntary. Private contact information is not made directly available to corporate partners, and introductions are managed through Rare Disease Watch according to your consent preferences.
