Volunteer Directory Research and Partnerships Coordinator

Rare Disease Watch is looking for a reliable, detail-focused volunteer to help people affected by rare diseases find trustworthy organisations, services, and support. This is a practical role for someone who enjoys investigating information, maintaining accurate records, and starting professional conversations with organisations they have not contacted before. About the Rare Disease Watch Rare Disease Watch connects patients, families, clinicians, researchers, and advocacy organisations across the rare disease community. The organisation provides clear, reliable reporting on research breakthroughs, new treatments, clinical advances, regulatory decisions, funding opportunities, and health policy changes. Its mission is to make complex scientific and medical information accessible, accurate, and trustworthy for a broad audience. We are building a global directory that makes patient organisations, specialist services, research centres, and other trusted sources of support easier to find. What You'll Do Research and Verification

• Find relevant rare disease organisations, clinics, research centres, and support services.
• Verify their purpose, location, conditions covered, contact details, and website.
• Record your sources and findings clearly.
• Identify outdated information, duplicate entries, and broken links. WordPress directory management
• Create and update listings using RDW's templates and directory system.
• Categorise listings accurately by condition, region, and service type.
• Check that every listing is clear, consistent, and supported by reliable sources. Partnership outreach
• Write personalised emails and LinkedIn messages to relevant organisations.
• Invite organisations to review their listing and explore appropriate collaboration.
• Follow up politely and keep accurate records of responses and next steps.
• Help interested organisations update or claim their listings. Why This Matters More than 7,000 rare diseases collectively affect around 300 million people worldwide. Patients and families can face long diagnostic journeys, isolation, limited visibility, and difficulty finding suitable support. A clear and accurate directory can connect someone searching after a new diagnosis with a patient organisation, specialist service, or community that understands. Every verified listing and new partnership makes reliable support easier to find. What We're Looking For Essential:
• Strong online research skills and attention to detail.
• Clear, warm written communication.
• Confidence contacting people you have not met and following up respectfully.
• Good organisation and the ability to work independently. Helpful, but not required:
• Basic WordPress experience.
• Experience with Google Sheets, Canva, CRM systems, or directory plugins.
• Familiarity with SEO, data entry, healthcare, rare disease, or patient advocacy. This is an unpaid volunteer role requiring a reliable commitment of 2–3 hours per week. It is ideal for someone who wants to support the rare disease community while gaining practical experience in research, WordPress, directory management, and professional outreach. As Rare Disease Watch grows, there may be opportunities for high-performing volunteers to be considered for paid or full-time roles.