A new Rare Aware chapter for Medics for Rare Disease
Medics for Rare Disease Chief Executive Officer to move on 15 years after founding original organisation
Thank you, Lucy: A new chapter for Medics for Rare Disease
Dr Lucy McKay will be moving on from her role as Chief Executive Officer of Medics for Rare Disease at the end of 2026 after a dedicated 8 years of service in the role and a total of 15 years advocating for greater rare disease training for medical professionals.
Lucy co-founded Barts and The London Society for Rare Disease in 2011, inspired by her family’s lived experience and the lack of rare disease awareness in her own medical education.
The organisation later evolved through Students4RareDiseases into Medics for Rare Disease, a registered charity shaping a medical profession providing people living with rare conditions a timely diagnosis and excellent care.
Celebrating 15 years of impact
Under Lucy’s leadership, the organisation has grown from a handful of student volunteers to a leading authority in national and international conversations about rare care. In her time, Lucy has delivered on pivotal publications such as the Red Flags of Rare Disease and a cross-stakeholder report on the impact of COVID-19 on the Rare Community, and has been a Commissioner for The Lancet Commission on Rare Diseases. With its foundational learning course, Rare 101, Medics for Rare Disease has educated thousands of healthcare professionals and medical students around the world. This educational offering only continues to expand alongside its training and advocacy activities thanks to the dedicated Medics for Rare Disease team.
Looking ahead to a Rare Aware future
Today, Medics for Rare Disease holds a unique place in the rare disease and healthcare ecosystem. This new era comes with the opportunity for an injection of fresh experience and different skills as Medics for Rare Disease designs and executes its plans to make the NHS ‘Rare Aware’.
Dr Lucy McKay says…
“The charity started as a society for medical students and has become a force for change. I’m so proud of how much we’ve achieved to date – we’ve shaped the language around rare disease and pioneered changes that no-one believed possible 10 years ago.
While I will always be part of this community I hold so dear, now is the right time for me to pass on the baton of leadership. I am confident that with the strong support of the Board and the team, Medics for Rare Disease will continue to drive rare awareness within the NHS and beyond. I am excited to see the game-changing next chapter.”
Sheela Upadhyaya, Chair of Trustees, says:
“Lucy has done an incredible job in building Medics for Rare Disease – as a small charity, it has become a vital stakeholder in the rare disease conversation and has made substantial impact on rare disease education for healthcare professionals in the UK and beyond. Planning is well underway to recruit a new CEO who will steer the organisation into its new phase. In the meantime, the trustee and staff teams remain focused on continuing to deliver the excellent work for which the charity is so highly respected.”
Recruiting our next Chief Executive
MfRD’s Board of Trustees have appointed Peridot Partners to support with recruiting the charity’s next Chief Executive with more information to be shared in due course.
If you would like to receive a copy of the recruitment microsite when the campaign goes live, please contact Bill Yuksel at Peridot Partners via bill@peridotpartners.co.uk
