Lucy McKay is a UK trained doctor and the CEO of Medics4RareDiseases. Lucy’s brother had a rare disease and she grew up around people with rare diseases. She studied Human Genetics at The University of Nottingham and then graduated from medicine at Barts and The London School of Medicine and Dentistry, QMUL, in 2014. Lucy completed her Foundation Training in West Yorkshire before becoming a locum in Paediatrics and then CEO of M4RD.
Jo is responsible for the day-to-day operations of the charity, handling both internal operations and external projects and communications. Jo also co-ordinates our annual symposium at the Royal Society of Medicine, our ambassador programme and is the first point of contact for all the advocates that get in touch with M4RD.
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.
Emma is a Doctor with a background in communications. Her role is to spread M4RD’s message to the medical community. This includes bringing our valuable patient stories to life and driving awareness for M4RD.
Emma studied Medicine at Barts and the London School of Medicine and Dentistry, before working as a Junior Doctor at the Royal London and Homerton hospitals. Prior to studying Medicine she worked in Marketing and Public Relations within the FMCG and charity sectors, which provided a broad and transferable foundation in Communications.
After 12 years in the Big Smoke, Emma moved to Cheltenham to start a family where she now resides with her husband and their two little boys.
Eleanor is our Digital Projects Officer and has an extensive background working as a Digital Content Producer for Hull UK City of Culture 2017, the BBC and The British Council. In this time she has worked on projects such as The Turner Prize, the installation project ‘Look Up’, and the launch of the CBeebies app Get Creative.
For the last few years she has been working on her own macrame business where she sells macrame wall hangings, instrument hangers and craft supplies via her website and on Etsy.
Eleanor is training in counselling and aside from these interests, is also a drummer in a band from Manchester who regularly enjoys gigging, getting fit and spending quality time with her cats.
Nadine is Project Coordinator at M4RD. She graduated from the University of Southampton last summer with a first-class degree in French and History, and began working for Lucy’s husband. She was then pinched by Lucy, and joined M4RD in January 2023 as an Executive Assistant to the CEO!
Nadine’s current role as Project Coordinator means she is responsible for delivering an NHS England contract for healthcare professionals, involving the development of the rare disease hub on the Genomics Education Programme website. Since joining M4RD, Nadine has loved travelling for exciting conferences and events (lookout for some of her blogs on our website!)
Lindsay Weaver is the Co-founder and CEO of Realise Advocacy, the former CEO of MSUK where she served for 6 years and has been a trustee at Medics 4 Rare Diseases since 2020. Lindsay also served as NHS England Metabolic CRG PPV member for over 4 years.
During her time working in rare diseases she has developed knowledge of how NHS England manage services and commission treatments for complex and rare conditions and the challenges that all stakeholders face in these processes.
Lindsay has built up significant knowledge of the difficulties that rare disease patients face in diagnosis and gaining access to the right care and treatments.
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.
Hannah originally studied Biology at The University of Edinburgh before undertaking her medical degree at Barts and The London where she was part of the team that founded the Barts and The London Society for Rare Diseases. She was interested in promoting the education of rare diseases amongst medical students, encouraging the ‘think outside the box’ mantra when considering a diagnosis.
Hannah is now training to be a GP in London and hopes she can utilise her knowledge of rare diseases to improve the rare patient journey in healthcare. She continues to campaign for rare disease education for medical students and doctors in training and is planning to introduce a rare disease training day into the local GP training schemes.
Alongside her medical studies Hannah also plays lacrosse to a high level and has represented Scotland at three World Cups.
Debra Fine initially studied Natural Sciences at Cambridge University. She then trained as a Chartered Accountant at PricewaterhouseCoopers LLP and worked there for five years. Debra retrained as a doctor, graduating from Barts and The London School of Medicine and Dentistry. She is now a GP Trainee at University College London Hospital.
She is Treasurer of Medics4RareDiseases and strongly believes in the importance of educating doctors and healthcare professionals about rare diseases.
Dan is the proud owner of not one but two rare conditions. At 4 years old Dan was diagnosed with Wyburn-Mason syndrome, an exceptionally rare Arteriovenous Malformation affecting the optic nerve and midbrain. Consequently he is blind in his left eye. It is thought that there has been less than 100 reported cases in the past 50 years – worldwide.
And then at 30, Dan was diagnosed with Acromegaly: a condition caused by excess release of growth hormones due to a pituitary adenoma. There are about 5 people per million diagnosed with this condition each year.
In 2015, Dan published his memoir ‘Me, Myself & Eye’. Since then, Dan has spoken at numerous events including the Vancouver Acromegaly Conference in 2017 (for which he won a scholarship place for his advocacy work), Rare and Orphan Drugs conference in Belgrade, Cambridge Rare Disease Network and more. Dan is also a Volunteer Ambassador for The Pituitary Foundation and has written numerous articles on what it means to ‘be rare’. Dan also founded the UK Acromegaly Meetup, now in its third year.
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