VHL UK/Ireland is a volunteer-led charity supporting individuals and families affected by von Hippel-Lindau Syndrome (VHL) and related rare genetic conditions. We provide information, peer support, advocacy, and fund vital research to improve lives.
We are currently inviting applications for two exciting opportunities to join our charity and play a key role in shaping our future. These voluntary roles offer a chance to contribute your skills, experience, and passion to a community-driven organisation making a real impact.
Role: Chair of Trustees – VHL UK/Ireland
Location: Remote (UK/Ireland-based)
Time Commitment: Approx. 1–2 days per month (including quarterly meetings)
Term: 3 years (renewable)
Voluntary Role (Unpaid)
The Role
We are seeking a new Chair of Trustees to lead our Board and help shape the future of the charity. This is a pivotal role at a time of growth and renewed strategic focus.
The Chair will work closely with the Board of Trustees and the wider volunteer team to ensure the charity is well-governed, impactful, and sustainable.
Key Responsibilities
- Leadership & Governance
- Provide inclusive leadership to the Board of Trustees.
- Ensure the charity complies with its governing document, charity law, and other relevant legislation.
- Facilitate effective decision-making and strategic planning.
- Board Management
- Chair quarterly trustee meetings and the Annual General Meeting (AGM).
- Support and appraise fellow trustees, encouraging active participation and development.
- Ensure the Board operates effectively and reflects the diversity of the community we serve.
- Strategic Oversight
- Guide the development and implementation of the charity’s strategic plan.
- Act as a sounding board for the Secretary and other officers on operational matters.
- Ambassadorship
- Represent the charity externally, including with partners, funders, and the VHL Alliance.
- Champion the charity’s mission and values in public forums and media opportunities.
- Collaboration
- Work closely with the Secretary, Treasurer, and other Co-Chairs to ensure smooth day-to-day operations.
- Support fundraising and awareness campaigns, including VHL Awareness Month and the annual Charity Ball.
- Engage with clinicians regarding potential grant awards and developments.
Person Specification
We are looking for someone who:
- Has experience of charity governance or leadership (not necessarily as a Chair).
- Is a confident communicator and facilitator.
- Demonstrates empathy and understanding of the challenges faced by people living with rare conditions.
- Is committed to equity, inclusion, and collaborative working.
- Ideally has lived experience of VHL or a related condition (not essential).
How to Apply
To express interest or request an informal conversation, please email trustees@vhl-uk-ireland.org with a short statement outlining your interest and relevant experience.
Secretary of Trustees
Location: Remote (UK/Ireland-based)
Time Commitment: Approx. 1–2 days per month
Term: 3 years (renewable)
Voluntary Role (Unpaid)
The Role
We are seeking a new Secretary of Trustees to support the governance and administration of the charity. This is a vital role that ensures the smooth running of trustee meetings and compliance with legal and regulatory requirements.
The Secretary will work closely with the Chair, Treasurer, and other trustees to maintain accurate records and facilitate effective communication.
Key Responsibilities
- Governance & Compliance
- Ensure the charity complies with statutory and regulatory requirements, including filing with the Charity Commission.
- Maintain up-to-date records of trustee appointments and declarations of interest.
- Meeting Administration
- Organise and schedule trustee meetings and the Annual General Meeting (AGM).
- Prepare and circulate agendas, minutes, and supporting documents.
- Record accurate minutes and actions from meetings.
- Communication & Coordination
- Act as the main point of contact for trustee communications.
- Support the coordination of trustee activities and follow-up on agreed actions.
- Liaise with external stakeholders as needed (e.g. Charity Commission, VHL Alliance).
- Documentation & Record-Keeping
- Maintain the charity’s governing documents and policies.
- Ensure secure and accessible storage of key documents and records.
Person Specification
We are looking for someone who:
- Has strong organisational and administrative skills.
- Is detail-oriented and reliable.
- Communicates clearly and professionally.
- Has experience of minute-taking and document management (not necessarily in a charity setting).
- Is committed to the values and mission of VHL UK/Ireland.
- Ideally has lived experience of VHL or a related condition (not essential).
How to Apply
To express interest or request an informal conversation, please email trustees@vhl-uk-ireland.org with a short statement outlining your interest and relevant experience.
