The Medics For Rare Disease Story

Medics for Rare Disease was set up by doctors who wanted to change the status quo of medical training.

From their first-hand experience of medical training, they knew how people living with rare conditions were being disadvantaged by the medical education system. And how this continues to cause challenges and avoidable pain for patients in the NHS.

The Board, Staff team and Ambassador network consists of healthcare professionals, people with lived experience and advocates who all share the same vision.

The student years — 2011–2017

What began in 2011 as a student society at Barts & The London grew into something far more ambitious. A small group of medical students, frustrated by how rarely rare disease featured in their training, started holding evening talks and building a community. By 2013 they had founded Students for Rare Diseases (S4RD) and hosted the first National Symposium — attracting delegates from across the country. Over the following years, S4RD earned recognition at international conferences and built relationships with patient advocacy groups that would shape the organisation’s ethos for years to come.

Becoming a charity — 2018–2020

The incorporation of M4RD at Companies House in December 2017 marked a turning point. What had been a grassroots student movement was becoming a proper organisation with a mission, a structure, and growing ambitions. The appointment of M4RD’s first CEO in 2018 brought professional leadership, followed swiftly by a new website, new branding, and — in June 2019 — full registered charitable status. By 2020 the team was presenting at the European Conference on Rare Diseases, a sign of the international stage they were beginning to occupy.

Growth and impact — 2021–2022

These were years of rapid expansion. The launch of Rare Disease 101 in February 2021 gave healthcare professionals across the UK a free, accessible learning resource — the first of its kind. The Rare Disease Podcast 4 Medics followed in October, reaching clinicians through Spotify and Apple Podcasts. In 2022, the organisation took RD101 to Australia in partnership with Western Australia’s Rare Care Centre, proving the model could travel. Training sessions for paramedic trainees, collaborations with the Royal College of General Practitioners, and a relaunched Ambassador Programme all reflected an organisation increasingly confident in its reach.

Reaching the NHS — 2023–2025

The milestone that mattered most came in October 2023, when Rare Disease 101 became mandatory training for FY1 doctors at Sheffield Teaching Hospitals NHS Foundation Trust — the first time rare disease education had been embedded as a requirement within an NHS setting. Research followed practice: the Red Flags survey, six years in the making, was published in the Orphanet Journal of Rare Diseases in April 2024, giving the organisation’s advocacy a peer-reviewed foundation. In January 2025, the organisation rebranded as Medics for Rare Disease — a name that better reflects where it has arrived: a national force in medical education, with its sights set on making rare disease everybody’s business.