Meet the Team

CEO

Lucy McKay

Dr Lucy McKay is a UK-trained doctor and CEO of Medics for Rare Disease. Growing up in a rare disease family, Lucy witnessed first-hand the challenges faced by people living with rare conditions, including the impact of delayed diagnosis and fragmented care. Her family’s experience included the development of a patient group that began around the kitchen table in her own home, giving Lucy a deep understanding of the importance of patient voice, advocacy and community.

Lucy studied Human Genetics at The University of Nottingham before completing her medical degree at Barts and The London School of Medicine and Dentistry, Queen Mary University of London. During her medical training, she recognised that gaps in healthcare professional education were contributing to prolonged diagnostic journeys and poorer experiences for patients living with rare diseases – a realisation that shaped her commitment to improving rare disease awareness across the medical profession.

After completing Foundation Training in West Yorkshire, Lucy worked as a locum doctor in Paediatrics before becoming CEO of Medics for Rare Disease. Combining her clinical background and lived experience, she leads M4RD’s work to create a Rare Aware medical workforce through education, advocacy and collaboration.

Alongside her leadership of M4RD, Lucy serves as a Commissioner for the RDI Lancet Commission on Rare Diseases and is a member of the UK Government’s Department of Health and Social Care Rare Diseases Framework Forum.

Lucy is passionate about ensuring that people living with rare conditions receive timely diagnosis, excellent care and recognition within healthcare systems worldwide.

Partnerships & Community Manager

Jo McPherson

Jo McPherson is our Partnerships & Community Manager, leading Medics for Rare Disease’s corporate partnerships, fundraising, community engagement and ambassador programme. She is also responsible for many of the charity’s day-to-day operations, including HR, finance, governance support, and strategic projects, working closely with the CEO to help deliver MfRD’s mission.

Jo is the primary point of contact for our corporate partners, patient advocacy groups and ambassador community, building meaningful collaborations that strengthen the rare disease community and support the charity’s long-term sustainability.

Before joining Medics for Rare Disease, Jo spent over nine years with the International Gaucher Alliance, where she developed extensive experience in rare disease advocacy, international partnerships and the not-for-profit sector. She has now dedicated more than 14 years of her career to improving the lives of people affected by rare conditions.

Based in Gloucestershire, Jo enjoys spending time with her family and escaping to the seaside whenever she can.

Training Programme Manager

Helen Maginnis

Helen Maginnis is our Training Programme Manager, leading Medics for Rare Disease’s healthcare professional education programme. She is responsible for developing and delivering training initiatives that improve understanding of rare conditions among healthcare professionals, including the expansion of Rare Disease 101 training across the UK and the development of new learning resources to support earlier diagnosis and better care.

Helen works closely with healthcare professionals, educators, partners and the rare disease community to ensure MfRD’s training remains relevant, accessible and impactful. She plays a key role in shaping our approach to medical education and supporting our mission to create a healthcare system where people living with rare conditions receive timely diagnosis and excellent care.

Helen studied medicine and genetics at the University of Glasgow, where her interest in rare disease began. After working as a junior doctor, she spent several years supporting families affected by Huntington’s disease before joining Medics for Rare Disease, bringing valuable clinical and patient-facing experience to her role.

Helen lives in Glasgow and loves escaping into the Scottish countryside.

Medical Communications Lead

Emma Huskinson

Strategic Operations & Communications Officer

Megan Barnes

Megan Barnes is our Strategic Operations & Communications Officer, responsible for keeping Medics for Rare Disease running smoothly behind the scenes. She oversees the charity’s day-to-day operations, supports project delivery and strategic planning, and leads our digital communications, including social media, website content and newsletters. Megan also plays a key role in monitoring and reporting the charity’s impact, helping to ensure our work continues to make a meaningful difference.

Before joining the MfRD team, Megan spent around 10 years working in microbiology and drug discovery research as a Research Scientist. She has worked across a range of disease areas, but it was through rare disease research that she became increasingly aware of the challenges faced by people living with rare conditions and their families.

Megan lives in Cambridge and loves spending time with animals.

TRUSTEE

Emma Macleod

Emma has worked in medical communications for over 10 years. Her role has always focused on communicating complex scientific ideas in an accessible, engaging and memorable way, tailored to the appropriate audience.

Emma discovered Medics for Rare Disease through her role at Emotive, an agency that works with the charity. She now hopes to support Medics for Rare Disease with strategy and messaging as a trustee.

She has coeliac disease, which means she understands first-hand the difficulties of living with a chronic condition that affects quality of life – even if it isn’t that rare!

Trustee

Chris France

Chris has a background in business, primarily fast moving consumer goods and pharmaceuticals.  In 2012 he left that world to start his own e-commerce company, which has since become the UK’s largest speciality beer site.

Whilst retaining active involvement in that, he also assists start-ups and budding entrepreneurs to get their businesses off the ground.  He lives in North Yorkshire and spends his spare time being outfoxed by his two young daughters.

TRUSTEE

Professor Russell Hearn

Professor Russell Hearn is a General Practitioner and academic. He works at Morris House Group Practice in North London, often supporting patients with rare conditions or those on uncertain diagnostic pathways. He is a Professor of Medical Education at King’s College London teaching medical students and recently opened a new medicine programme in partnership with the University of Portsmouth. He also works for NHS England as a Primary Care Dean supporting workforce development and education for multidisciplinary learners in Primary Care across London.

TRUSTEE

Sheela Upadhyaya – Rare Disease Expert & Life Sciences Consultant

Sheela Upadhyaya is a consultant with over 25 years of healthcare experience, specialising in rare diseases. She has worked internationally, integrating innovative therapies into the NHS and leading over 20 evaluations of rare disease treatments at NICE.

She chairs initiatives fostering collaboration between industry and European Reference Networks and co-leads special interest groups in rare diseases  internationally. A recognised expert in market access, patient engagement  and rare disease policy, she has co-authored papers on rare disease challenges and contributed to the national Rare Disease Framework.

Sheela is committed to building partnerships and driving collaboration to improve outcomes in rare diseases.

TRUSTEE

Harriet Gordon-Brown

Harriet has built her career in international development, leading health, education, and rural development programmes across East Africa and South Asia. She is currently CEO of CHASE Africa, an NGO working through local partners to improve the health of remote rural communities, with a strong focus on sexual and reproductive health and rights. Her previous work at the University of Exeter and Public Health England explored the links between human and environmental health, and she was a founding trustee of TackleAfrica. Harriet brings extensive experience in charity leadership, governance, strategy, programme development, fundraising and donor stewardship, and partner management of complex interdisciplinary projects.

Alongside her professional expertise, Harriet has a personal connection to the rare disease community as a parent: two of her three children live with different rare conditions. She has first-hand experience of the long diagnostic process, and the physical and emotional challenges those living with a rare disease face. This combination of professional skills and personal insight motivates her to help Medics for Rare Disease improve training and awareness amongst the medical community for those living with rare diseases.