Rare Disease Watch is building an international community dedicated to improving the lives of people affected by rare diseases through collaboration, education, innovation and strategic partnerships.
Our vision is to bring together patients, families, researchers, clinicians, healthcare professionals, charities, industry, policymakers and innovators to accelerate progress across the global rare disease landscape.
As we continue to grow internationally, we are inviting experienced leaders from around the world to join our Global Founding Advisory Board.
This is an opportunity to contribute your expertise, experience and perspective to an ambitious organisation during one of the most important stages of its development.
The Global Founding Advisory Board provides independent strategic guidance to support the long-term development of Rare Disease Watch.
Board members bring together diverse expertise from healthcare, research, biotechnology, pharmaceuticals, medical technology, patient advocacy, government, investment, business and the wider life sciences sector.
The Board does not oversee the day-to-day management of Rare Disease Watch. Instead, members help shape the organisation's direction by providing strategic advice, constructive challenge, independent perspectives and valuable connections.
Our aim is to create an environment where experienced leaders can openly share ideas, challenge assumptions and help us make better strategic decisions.
We welcome applications from senior professionals who have demonstrated leadership within their sector and who are passionate about improving outcomes for people living with rare diseases.
This includes individuals from areas such as:
We value diversity of experience, geography and perspective, recognising that meaningful innovation comes from collaboration across disciplines.
Every member contributes differently according to their expertise, interests and professional network.
Board members may:
There is no expectation that Board members will become involved in the day-to-day management or operational delivery of Rare Disease Watch.
We understand that our Advisory Board members are experienced professionals with demanding careers.
Our objective is to make every interaction valuable, focused and respectful of your time.
The expected commitment includes:
Meeting dates are normally agreed well in advance to allow members to plan accordingly.
Board meetings focus on the strategic development of Rare Disease Watch.
Typical discussions may include:
Board papers are circulated before each meeting, allowing members to prepare and ensuring meeting time is used for productive discussion rather than presentations.
Founding Advisory Board Members have a unique opportunity to influence the direction of Rare Disease Watch during its formative years.
The decisions made today will shape how the organisation develops, the partnerships it builds and the impact it creates over the coming years.
As a Founding Advisory Board Member, you will become part of an international network of respected leaders working together to improve outcomes for people affected by rare diseases worldwide.
We are committed to building a Board that is professional, collaborative and genuinely influential.
As an Advisory Board Member, you can expect:
Above all, we aim to create an Advisory Board where every member feels their experience is respected, their contribution is valued and their time is used effectively.
If you would like to help shape the future of Rare Disease Watch and become part of an international community committed to accelerating progress in rare diseases, we would be delighted to welcome your application.
Together, we can build an organisation that connects expertise, strengthens collaboration and creates meaningful change for millions of people affected by rare diseases around the world.
