Volunteering, Participation and Organisational Responsibilities
Rare Disease Watch welcomes volunteers who want to contribute their time, knowledge, experience and skills to improving understanding of rare diseases.
Our volunteers may include patients, carers, researchers, healthcare professionals, students, writers, advocates and individuals with experience in communications, business development or community engagement.
Some bring scientific or professional expertise. Others contribute personal experience, practical skills or a willingness to help.
We recognise that people have different circumstances and levels of availability. Volunteering should provide an opportunity to make a useful contribution without creating unreasonable expectations or obligations.
This statement explains the nature of volunteering with Rare Disease Watch, the activities volunteers may undertake, the support available and the standards expected of everyone involved.
It forms part of the Rare Disease Watch Governance Framework.
Rare Disease Watch works to improve access to reliable rare disease information and encourage responsible collaboration between people affected by rare diseases and the organisations working in this field.
Our activities are organised around three areas.
Inform
Publishing evidence-informed reporting, educational resources and accessible explanations of rare disease research, healthcare and policy.
Connect
Bringing together patients, carers, researchers, healthcare professionals, patient organisations and other relevant groups through appropriate community activities and introductions.
Collaborate
Supporting responsible engagement between rare disease communities, research organisations, healthcare professionals, policymakers and industry.
Volunteers may contribute to one or more of these activities according to their interests, skills and availability.
Rare Disease Watch offers opportunities to contribute across different areas of the organisation.
Writing and Editorial Contributions
Volunteers may research, write or contribute to articles, interviews, educational resources and other publications.
Contributions may include scientific reporting, patient perspectives, healthcare developments and information about rare disease organisations.
All published material must comply with the organisation's Editorial Standards and Contributor & Author Guidelines.
Awareness and Education
Volunteers may support awareness initiatives, educational campaigns, communications and the promotion of relevant events or resources.
Events and Media
Volunteers may contribute to webinars, interviews, discussions and other activities intended to share knowledge and encourage engagement.
Outreach and Partnerships
Volunteers may help identify relevant organisations, establish initial contacts and support authorised outreach activities.
They must not enter into agreements or make commitments on behalf of Rare Disease Watch without appropriate permission.
Community Engagement
Volunteers may support information sharing, community discussions and appropriate engagement with patients, carers and other members.
These activities must respect confidentiality, safeguarding requirements and individual boundaries.
Resources and Reference Information
Volunteers may assist with the development and maintenance of educational resources, the directory of organisations and the glossary of rare disease terminology.
Ideas and Organisational Development
Volunteers are encouraged to suggest improvements, identify opportunities and contribute ideas for new resources, initiatives or platform features.
Not every activity will be available at all times. Responsibilities will be agreed according to organisational needs and the volunteer's interests and capabilities.
Volunteering with Rare Disease Watch is voluntary and unpaid.
There is no required minimum time commitment.
Volunteers may contribute according to their availability and can discuss changes to their involvement with their designated contact.
The intention is to establish a flexible arrangement based on mutual understanding rather than fixed employment obligations.
Volunteers are not appointed as employees through their volunteer role. The arrangement is not intended to create an employment contract or employment relationship.
The precise nature of an individual's involvement will be explained during onboarding and recorded where appropriate.
Either the volunteer or Rare Disease Watch may end the volunteering arrangement at any time, subject to any applicable legal obligations and separately agreed arrangements.
Rare Disease Watch aims to provide a professional, respectful and constructive environment.
Volunteers can expect:
The organisation will aim to provide sufficient information for volunteers to understand their responsibilities and the boundaries of their role.
Volunteers should not be expected to undertake activities for which they lack appropriate knowledge, authorisation or support.
Volunteers are expected to act responsibly and consistently with the organisation's objectives.
This includes:
Volunteers are encouraged to ask for guidance when a task falls outside their experience or agreed responsibilities.
Volunteers will normally complete an onboarding process appropriate to their role.
This may include:
Volunteers involved in editorial work may also be asked to review existing publications and complete an initial assignment with editorial feedback.
A separate Volunteer Onboarding Pack and Volunteer Agreement provide further information.
Volunteers involved in writing, reviewing or preparing published material must follow Rare Disease Watch's editorial requirements.
Content must be accurate, appropriately sourced and accessible to its intended audience.
Scientific and medical claims must be supported by reliable evidence.
Preliminary research must not be presented as established clinical practice.
Contributors must not invent references, quotations, statistics or research findings.
Artificial intelligence may assist with drafting, structure or other editorial tasks, but factual claims and references must be independently verified.
All submitted material is subject to appropriate editorial review before publication.
Related documents:
Volunteers may have professional, financial or organisational relationships relevant to Rare Disease Watch's activities.
These may include employment, research funding, consultancy, industry relationships, membership of other organisations or involvement in studies being discussed.
Relevant conflicts must be disclosed when joining and whenever circumstances change.
A conflict does not automatically prevent someone from volunteering.
Rare Disease Watch will assess whether the conflict can be managed appropriately through disclosure, independent review, changes to responsibilities or other measures.
Volunteers must not use their position to obtain inappropriate personal or commercial advantage.
All volunteers must comply with the Conflict of Interest Policy.
Volunteers may encounter personal information, including details about individuals living with rare diseases.
Rare disease communities can be small. Information that appears anonymous may still identify an individual when combined with other details.
Volunteers must handle personal information carefully and only use it for authorised purposes.
They must not:
Volunteers should use approved systems and follow instructions concerning information storage, access and deletion.
Requests relating to personal data should be referred to support@rarediseasewatch.com.
All volunteers must comply with the Privacy Policy.
Rare Disease Watch provides educational and informational material.
Volunteers must not provide individual medical diagnoses, treatment recommendations or clinical advice on behalf of the organisation.
This restriction applies even where a volunteer has professional healthcare qualifications.
Volunteers may share appropriately approved educational resources and direct individuals towards their own healthcare professionals.
They must not imply that Rare Disease Watch can provide treatment, secure clinical appointments or guarantee participation in research.
Volunteers should familiarise themselves with the website's Medical Disclaimer.
Rare Disease Watch expects volunteers to treat everyone with dignity and respect.
Discrimination, harassment, intimidation, exploitation and inappropriate conduct are not acceptable.
Volunteers must respect personal boundaries, confidentiality and the circumstances of individuals affected by rare diseases.
Where a volunteer becomes concerned about someone's immediate safety or welfare, they should promptly raise the concern through the designated organisational reporting arrangements.
Concerns involving children or adults at risk require particular care.
Volunteers must not attempt to investigate or manage serious safeguarding matters independently.
Where there is immediate danger, appropriate emergency services should be contacted.
Related documents:
Volunteers may support communications, outreach and awareness activities within their agreed responsibilities.
They must not represent themselves as authorised to make organisational decisions unless permission has been granted.
Volunteers must not:
Media enquiries and requests for official organisational comment should be referred to an authorised representative.
Volunteering is unpaid, and expenses are not routinely reimbursed.
Volunteers should not incur expenses on behalf of Rare Disease Watch without obtaining written approval in advance.
Where reimbursement is agreed, the applicable arrangements should be confirmed before expenditure occurs.
Volunteers should also be informed of any insurance arrangements relevant to their activities and any limitations of that cover.
The organisation's insurance position should be confirmed before volunteers undertake activities that may involve material risks.
Volunteers should not assume that personal expenditure or activities outside their agreed role will be covered by Rare Disease Watch.
Rare Disease Watch values the time, knowledge and experience contributed by volunteers.
Recognition may include:
Public recognition will be subject to the volunteer's preferences and applicable privacy requirements.
Not all activities will result in public credit, particularly where confidentiality or the nature of the work makes this inappropriate.
Volunteers must ensure that material submitted to Rare Disease Watch is original or appropriately licensed.
They must not reproduce third-party material without the necessary permission or other lawful justification.
Ownership and permitted use of work created by volunteers will be addressed in the applicable Volunteer Agreement or other written arrangements.
Where Rare Disease Watch requires ownership of copyright or permission to edit, publish, reproduce or distribute material, those rights must be established appropriately.
Volunteers should not assume that contributing work automatically transfers all intellectual property rights to the organisation.
Related document:
Contributor & Author Guidelines
Volunteers will be provided with a designated organisational contact appropriate to their activities.
They are encouraged to communicate openly about their availability, responsibilities and any difficulties affecting their involvement.
Where a volunteer wishes to change activities, reduce their involvement or take a break, they should discuss this with their contact where practical.
General administrative enquiries may be sent to:
Volunteers should feel able to raise concerns about organisational activities, professional conduct, confidentiality, safeguarding or other matters affecting their involvement.
Concerns should normally be raised with the designated organisational contact.
Where the concern involves that individual, or where an alternative reporting route is appropriate, the volunteer may contact support@rarediseasewatch.com.
Concerns should be considered fairly and with appropriate attention to confidentiality and potential conflicts of interest.
Volunteers raising genuine concerns in good faith should not be subjected to retaliation.
Further information is provided in the Complaints & Concerns Policy.
Volunteers may pause or end their involvement at any time.
Where practical, a short message to the designated contact is appreciated so that outstanding activities can be reassigned or concluded.
Rare Disease Watch may also end a volunteering arrangement where organisational needs change or where an individual is unable to meet the requirements of the role.
An arrangement may be ended where there are serious concerns about conduct, confidentiality, conflicts of interest or compliance with organisational policies.
When volunteering ends, access to internal systems and confidential information should be withdrawn as appropriate.
Any continuing confidentiality, data protection or intellectual property obligations remain subject to the relevant agreements and applicable law.
This Volunteer Statement forms part of the Rare Disease Watch governance arrangements.
It may be revised to reflect changes in organisational activities, volunteering arrangements, legal obligations or operational requirements.
Material amendments require approval by an appropriately authorised representative of Rare Disease Watch.
Individual volunteers will be informed of relevant changes affecting their responsibilities or arrangements.
Organisational Governance
Editorial and Contributor Responsibilities
Community Participation and Conduct
Information and Accountability
