For individuals volunteering with Rare Disease Watch (RDW)
At Rare Disease Watch, we are deeply grateful to everyone who contributes their time, expertise, insight, and energy to support the rare disease community. Our volunteers play an important role in helping to raise awareness, improve understanding, amplify patient and caregiver voices, and support the development of accessible information, discussion, and collaboration across the rare disease landscape.
This statement outlines the mutual understanding between RDW and our volunteers.
We value all contributions, whether large or small, and recognise the unique perspectives and strengths each volunteer brings.
We understand that your time is freely given, and we greatly appreciate your willingness to contribute.
We aim to provide a respectful, collaborative, and inclusive environment that welcomes people from diverse professional and personal backgrounds.
Certificates of recognition can be provided upon request to acknowledge your support and contributions.
Where appropriate, your work, including articles, interviews, webinars, awareness activities, or initiatives, may be promoted with full credit to support your professional visibility and development.
There is no required minimum commitment. Your involvement is entirely voluntary and always appreciated.
Our volunteers may:
• Support awareness and educational initiatives
• Write or co author articles, insights, or patient stories
• Participate in webinars, interviews, discussions, or campaigns
• Assist with outreach to organisations, collaborators, advocates, or partners
• Share ideas for new initiatives, resources, or platform features
• Help promote events, campaigns, and awareness activities
• Support community engagement and information sharing
• Contribute professional expertise or lived experience perspectives where appropriate
Volunteers are encouraged to contribute in ways that align with their interests, expertise, availability, and experience.
Volunteering with RDW is voluntary and unpaid.
Volunteers are not employees and are not covered by employment laws or contracts.
Either party may end the volunteer arrangement at any time without formal notice.
While we are not currently in a position to routinely reimburse expenses, we hope to develop this capability as the organisation grows and resources allow.
Please act respectfully, professionally, and constructively in all interactions connected to RDW.
Ensure that contributions align with our values of integrity, inclusion, collaboration, scientific responsibility, and respect for individuals and families affected by rare diseases.
Respect the confidentiality, dignity, and experiences of all individuals involved in the community.
We aim to appropriately credit all volunteer contributions where relevant.
Any material produced as part of a volunteer role may be edited or adapted to align with RDW’s mission, editorial standards, and platform requirements.
Unless otherwise agreed in writing, work created on behalf of RDW remains the intellectual property of Rare Disease Watch.
As a developing organisation, RDW does not currently provide volunteer insurance. Volunteers remain responsible for their own wellbeing, conduct, and professional obligations.
By volunteering with Rare Disease Watch, you are helping to strengthen awareness, education, visibility, and collaboration within the rare disease community. Your contribution helps support individuals, families, professionals, researchers, and advocates working across a complex and often underrepresented area of healthcare and society.
We are sincerely grateful for your support.
