Trustee (with lived experience of rare disease)

ABOUT MEDICS FOR RARE DISEASE

Our Vision is equitable healthcare for everyone and our Mission is to shape a #RareAware medical profession that can provide a timely diagnosis and excellent care to people living with rare disease.

We advocate for Rare Aware healthcare, provide training to doctors in the UK and are building a network of Rare Aware healthcare professionals globally. Through our activities we aim to reduce diagnostic delay, improve the patient experience and support more equitable healthcare.

We work in partnership with people living with rare conditions, families, advocates, healthcare professionals, educators, organisations and wider stakeholders to create meaningful and lasting change across the healthcare system.

ABOUT THE TRUSTEE ROLE

We are looking for a new Trustee with lived experience of rare disease to join and strengthen our Board as the charity embarks on its Rare Aware NHS strategy.

This is an opportunity for someone who understands the realities of living with a rare condition to shape the future of rare disease training  and care  within the NHS.

As a Trustee, you will bring your insight, experience and perspective to Board discussions, helping ensure that the experiences of people affected by rare disease are meaningfully considered in our strategy, decision-making and activities.

This role is not about representing every person affected by rare disease. Instead, it is about bringing valuable lived experience alongside the skills, knowledge and expertise of our wider Board.

WHAT YOU WILL DO

As a Trustee, you will:

• Contribute to the strategic direction and future development of MfRD.

• Support good governance and effective decision-making.

• Provide constructive challenge, guidance and insight to the Board.

• Help ensure MfRD’s work remains connected to the needs and experiences of the rare disease community.

• Bring a lived experience perspective to discussions around healthcare education, accessibility and patient-centred care.

• Work collaboratively with fellow Trustees, staff and partners.

WHO WE ARE LOOKING FOR

We welcome applications from people who can demonstrate:

• Lived experience of rare disease, either personally or through close experience supporting someone affected by a rare condition.

• A commitment to MfRD’s vision and values.

• The ability to contribute thoughtfully and constructively as part of a Board.

• An interest in improving healthcare experiences and outcomes for people affected by rare disease.

• A willingness to devote the time required to fulfil Trustee responsibilities.

You do not need previous Trustee experience; we welcome people who are new to charity governance and will provide support and induction.

We are particularly interested in hearing from people with different experiences and perspectives who can help us continue to build an inclusive and representative organisation.

WHAT WE OFFER

As a Trustee, you will:

• Play an important role in shaping the future of MfRD.

• Help influence meaningful change in rare disease healthcare.

• Work alongside a passionate and supportive team.

• Receive a full induction and ongoing Trustee support.

• Have access to Trustee training and development opportunities.

• Have approved expenses reimbursed.