Rare Disease Watch
Global Community Research and Outreach
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About Us
Rare Disease Watch is looking for passionate volunteers to help build one of the world's most comprehensive rare disease directories: a trusted digital platform connecting patients, families, clinicians, researchers, and advocacy organisations across the globe.
As an independent, community-driven initiative, we're creating a structured directory covering more than 500 rare diseases and the organisations, specialist services, research centres, clinical trials, and support networks that serve them.
We are driven by the belief that reliable knowledge changes lives and that the rare disease community deserves better than scattered, inaccessible, or biased information. We're growing quickly, and we're looking for people who want to help build the digital infrastructure that will support millions worldwide.
About the Role
As a Global Community Development Volunteer, you will help identify, verify, and organise trusted information across a structured global directory covering rare disease organisations, patient advocacy groups, specialist clinics, clinical trials, biotech companies, funding opportunities, and more.
This role is ideal for someone who enjoys research, knowledge management, and making a meaningful difference in healthcare access worldwide.
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What You'll Be Doing
- Researching rare disease organisations and patient advocacy groups worldwide
- Identifying and onboarding organisations, research groups, advocacy bodies, and support networks
- Verifying and organising directory listings into structured categories
- Improving existing entries for accuracy and completeness
- Supporting platform development through ideas and feedback
What We're Looking For
- Excellent research and organisational skills
- Strong attention to detail
- Clear written English
- The ability to work independently and take initiative
- A genuine interest in improving access to healthcare information
Desirable (but not essential):
- Experience with WordPress, spreadsheets, databases, or AI research tools
- An interest or background in healthcare, life sciences, public health, or nonprofit organisations
No prior rare disease experience required.
The Impact You'll Make
Every organisation and resource you help identify has the potential to:
- Connect patients and families with support sooner
- Increase visibility for patient advocacy organisations
- Improve access to specialist care and trusted information
- Strengthen collaboration between researchers and clinicians
- Support innovation across the global rare disease ecosystem
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Your contribution will help create digital infrastructure that supports better health outcomes across the global rare disease community.
What You'll Gain
- Experience contributing to an international digital health initiative
- Practical research, data management, and outreach experience
- Exposure to the rare disease, biotechnology, and digital health sectors
- Opportunities to collaborate with professionals across multiple disciplines
- Professional networking opportunities
- A LinkedIn recommendation for sustained high-quality contributions
- Opportunities to grow into leadership roles as the platform expands
- Public recognition as part of the Rare Disease Watch volunteer community
Why Join Rare Disease Watch?
This is an opportunity to work directly with our founders on a mission-driven project with a real global impact. You'll gain valuable professional experience while helping build a trusted resource that supports patients, families, clinicians, researchers, and organisations worldwide.
Whether you're looking to develop new skills, contribute to your expertise, or simply make a meaningful difference, we'd love to hear from you.
Location: Remote
Open to volunteers worldwide
Flexible hours
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