Beacon is proud to welcome five new trustees to our board in our 13th year of operation!
Meet the new faces joining the Beacon team who’ll be helping us to ensure that no one faces their rare journey alone.
Be sure to say hello to them at our next event and join us in welcoming these amazing advocates to the charity!
Everyone at Beacon is really excited to have five such talented and committed people joining the board. It has been fantastic to see the reception to our trustee recruitment, and the high quality of candidates who are keen to help our charity. I want to thank everyone who applied and supported the process, and give the warmest welcome to our five new trustees. I’m so excited to work with them all!
“I’m delighted to welcome our five new trustees to Beacon for Rare Diseases. Each brings invaluable experience — from living with a rare condition, to founding a rare disease patient group, to deep expertise across the rare disease ecosystem, finance, and operations.
We are at an exciting moment in Beacon’s journey. With this expanded board, we are strengthening our ability to champion rare disease communities, support patient groups, and continue pushing for a world where those affected by rare conditions are heard, supported, and empowered.
Our new trustees bring insights and lived experience that will help us sharpen our strategy, broaden our impact, and ensure Beacon remains a trusted home for rare disease patient advocacy. I’m thrilled to begin this next chapter together.”
Introducing…
Michael Wilbur
Profession:
Independent consultant/founder of MW Advocacy Solutions
Bio:
Michael Wilbur has worked at NHS England and EURORDIS, where he oversaw the Rare Disease Day campaign. He now works as an independent consultant in patient advocacy and corporate affairs, and is a regular contributor to RARE Revolution insider. Michael is also a trustee of the International Wildlife Coalition Trust.
Why did you decide to join Beacon’s trustee board?
I decided to join Beacon’s trustee board because, during my time at EURORDIS, I saw firsthand how Beacon provides real intellectual leadership on key issues such as repurposing, now widely recognised as an important opportunity for people living with a rare disease, and equally meaningful hands-on support to patient groups that are just starting out or looking to professionalise.
Our rare disease ecosystem relies on strong, empowered and effective patient advocates who can unite their communities into patient groups, and Beacon plays a vital role in making that possible. I’m pleased to support their work, particularly in strengthening connections across Europe and identifying new opportunities for collaboration with patient organisations and industry.
Rebecca Godfrey
Profession:
Chief Operating Officer, ExpressionEdits
Bio:
Dr Rebecca Godfrey is a biotech industry leader with 20 years’ experience across biotech, academia, and global pharma. Now COO at ExpressionEdits, she has previously held leadership roles at Roche, AbbVie, Eisai, and Freeline, bringing deep expertise in scaling organisations, guiding global operations, and driving innovation across therapeutic modalities.
What are you most looking forward to as a member of Beacon’s trustee board?
I’m excited to join Beacon’s board as it continues to strengthen and scale its impact across the rare disease community.
Having lost my dad to MND, I’m driven to combine my professional experience with my personal connection to champion better support, collaboration, and outcomes for rare disease patients and families.
Kamlesh Sheth
Profession:
Pharmaceutical Physician, Rare Disease Leader, Charity Trustee, Chair of Life Sciences Boards
Bio:
Dr Kamlesh Sheth is a Pharmaceutical Physician and rare disease specialist with over 35 years’ experience in healthcare, industry, academia and patient advocacy. He chairs life sciences companies and has served as a Charity trustee, with expertise in strategic governance, financial oversight and supporting patient engagement across the rare disease sector.
What are you most looking forward to as a member of Beacon’s trustee board?
I am most looking forward to working with the board and team to expand Beacon’s reach, strengthen financial resilience and amplify support for rare disease patients and their families.
Contributing my sector knowledge and governance experience to achieve meaningful impact for the community excites me most.
Shannon Gunn
Profession:
Senior Science Writer, Wellcome Sanger Institute
Bio:
Shannon is a Senior Science Writer at the Wellcome Sanger Institute with expertise in science and medical communication. Living with Ehlers-Danlos Syndrome, she is committed to elevating the patient voice and ensuring it remains central to research and healthcare conversations.
Why did you decide to join Beacon’s trustee board?
I joined Beacon’s trustee board to help strengthen the rare disease community and ensure patient voices drive meaningful change.
As someone with lived experience, I want to support an organisation that empowers patients, influences research, and improves support systems for those navigating rare conditions.
Scott Hutchings
Profession:
Senior Technical Support Engineer (Business Technology), Bistech Group PLC
Bio:
Scott is the Founder of CHAMP1 UK and serves on the boards of the US and EU CHAMP1 Research Foundations. Inspired by his daughter Sienna’s diagnosis and his late father’s battle with rare leukaemia, he brings authentic lived experience, technical expertise, and boundless energy to the rare disease community.
Why did you decide to join Beacon’s trustee board?
Beacon has been pivotal in my own rare disease journey.
I joined the board to give back to the organisation that helped me, and to use my experience to empower other patient groups and champion collaboration across the sector—firmly believing that we are stronger together.
