Rare Disease Watch
Global Community Research and Outreach
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About Rare Disease Watch
Rare Disease Watch is an independent digital knowledge and directory platform helping patients, families, clinicians, researchers and organisations navigate reliable rare disease information.
We are building a structured global directory of rare disease organisations, specialist services, research centres, clinical trials, patient advocacy groups and other relevant resources.
About the Role
We are looking for a Global Rare Disease Research & Community Outreach Volunteer to help research, verify and organise information for our growing directory and community network.
This is a practical role for someone who enjoys research, organising information, discovering organisations and outreach.
What You'll Do
- Research rare disease organisations, advocacy groups, clinics and research centres worldwide.
- Identify and verify organisations and resources for our directory.
- Maintain and improve directory information.
- Research and identify potential community and partnership opportunities.
- Support outreach to relevant organisations.
- Help improve our research and directory processes.
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What We're Looking For
- Strong research and organisational skills.
- Attention to detail and clear written English.
- Ability to work independently and take initiative.
- Reliable follow-through on agreed tasks.
- Interest in healthcare, life sciences, public health or digital health.
- Desirable but not essential: experience with Excel/Google Sheets, databases, WordPress, AI research tools, community outreach, partnerships or healthcare.
Commitment
2–4 hours per week for an initial 3-month commitment. The schedule is flexible, but we are looking for volunteers who can make a consistent contribution and communicate proactively about their availability.
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What You'll Gain
- Practical experience in rare disease and digital health.
- Research, data and community outreach experience.
- Exposure to the global rare disease ecosystem.
- Opportunities to take on additional responsibilities and develop into specialist or leadership roles.
How to Apply
Applicants will complete a short application form covering motivation, role fit, skills and availability. Shortlisted candidates will be invited to a brief interview.
This is an unpaid volunteer position and is open to volunteers worldwide.
If you enjoy research, learning and building something with a global purpose, we would be interested in hearing from you.
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