Help Build Rare Disease Watch: Founding Council Opportunity

Rare disease has probably touched more lives than most of us realise.

It may be through a diagnosis of our own, supporting a family member, working with patients, conducting research, developing treatments or helping an organisation navigate a system that was not designed around rare conditions.

Rare Disease Watch is a new international initiative being developed to improve awareness, education, connection and collaboration across the rare disease community. We want its direction to be shaped by people who understand that community, whether through personal experience, professional expertise or both.

We are now inviting applications for a small group of Founding Rare Disease Advisory Council Members.

This is not a salaried position. Founding members will be asked to make an annual contribution of at least £1,000 towards the development of Rare Disease Watch, as well as contributing their experience, ideas and connections. We are stating this clearly because we want applicants to understand the nature of the opportunity before applying.

Who we hope to hear from We are particularly interested in people who have a genuine connection to rare disease, including:

• People living with a rare condition

• Parents, carers and family members

• Patient advocates and leaders of rare disease organisations

• Clinicians, researchers and healthcare professionals

• Biotechnology and pharmaceutical leaders

• Health technology and digital health specialists

• Investors and advisers with relevant healthcare experience

• Corporate leaders who want to support the rare disease community

Applicants do not need to fit neatly into one category. What matters is that they understand something of the challenges faced by people affected by rare disease and want to help build a useful, credible international platform.

What founding members will contribute The council will meet approximately four times each year. Between meetings, members may also choose to help through:

• Strategic advice

• Relevant introductions

• Partnerships and collaborations

• Advocacy

• Speaking and webinar participation

• Articles and expert contributions

• Development of programmes and resources

• Support for the long-term sustainability of the organisation

We are looking for active contributors, rather than people who simply want their name attached to an advisory board.

What founding members will help shape Members will have an opportunity to influence the early development of Rare Disease Watch, including its priorities, partnerships, educational work, patient involvement and international reach.

They will also be recognised as part of the founding council and may have opportunities to participate in articles, webinars, discussions and public events where these are relevant to their experience.

About the founder Rare Disease Watch was founded by Dr Shara Cohen, a scientist and entrepreneur who has built organisations supporting patients, healthcare communities and women in STEM.

Dr Cohen was awarded the British Empire Medal in His Majesty The King’s New Year Honours for services to women in STEM and to cancer patients and their families. Her work includes founding Cancer Care Parcel and The Women in STEM Network, as well as previously building and selling international life-science businesses.

The founding contribution Founding council members are asked to contribute at least £1,000 annually towards the development and running costs of Rare Disease Watch.

The contribution does not purchase influence or decision-making authority. It helps fund the organisation during its early development and sits alongside the member’s active contribution of experience, advice and support.

Organisations interested in providing more substantial financial support or becoming strategic partners are welcome to contact us separately.

We are building a small founding group, so applications will be considered according to relevant experience, connection to rare disease, what the applicant hopes to contribute and the balance of perspectives across the council.