Meet the Team

CEO

Lucy McKay

Partnerships & Community Manager

Jo McPherson

Jo McPherson is our Partnerships & Community Manager, responsible for M4RD’s Corporate Partnership Programme, Ambassador Programme and the key point of contact for Patient Advocacy Groups.

Prior to joining the M4RD team, Jo worked for the International Gaucher Alliance for over 9 years, so has extensive experience of working in a rare disease and not-for-profit environment.

Jo lives in Gloucestershire and loves escaping to the seaside!

Training Programme Manager

Helen Maginnis

Helen Maginnis is our Training Programme Manager and is responsible for M4RD’s healthcare professional training projects and activities, rolling out Rare Disease 101 training for healthcare professionals all over the UK!

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 impacted by Huntington’s disease before joining M4RD.

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

Medical Communications Lead

Emma Huskinson

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

Dan Jeffries

Dan is the proud owner of not one but two rare conditions. Diagnosed at age 4 with Wyburn-Mason syndrome—a vascular condition so rare there have been fewer than 100 cases worldwide in 50 years—he lost vision in his left eye. At 30, he was diagnosed with Acromegaly, a growth hormone disorder affecting just five in a million people annually.

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

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.