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Our Team

The team is made up of individuals with a wide range of interests and skills, working in areas such as policy, public affairs, research and public engagement, with backgrounds both in the natural and social sciences.

LAUREN ROBERTS

Joint Interim Chief Executive/Director of Engagement and Support

NICK MEADE

Joint Interim Chief Executive/Director of Policy

NATALIE FRANKISH

POLICY AND ENGAGEMENT MANAGER - SCOTLAND

BRIDGET HARPWOOD

ENGAGEMENT AND SUPPORT OFFICER (WALES)

EMMA HUGHES

POLICY AND ENGAGEMENT MANAGER - WALES

Our Trustees

We are governed by a Board of Trustees made up of representatives of our patient organisations who set the charities strategic aims and monitor the delivery of our objectives.

ELIZABETH PORTERFIELD

Elizabeth (Liz) Porterfield cared for her son who had Huntington’s Disease. Liz recently retired from her role as Head, Strategic Planning and Clinical Priorities, with the Scottish Read More »

SUE MILLMAN

Sue Millman has spent her career in the voluntary sector. Initially Sue worked with people who were homeless or needing support in their housing situation, including refugees, Read More »

DAVID RAMSDEN

David Ramsden has been Chief Executive of the Cystic Fibrosis Trust since December 2016. He has almost 20 years experience of working in the charity sector and Read More »

SONDRA BUTTERWORTH

Sondra’s passion comes from her personal experience of the effects of rare conditions within her own family, and from having over 10 years’ experience working for charities. Read More »

GLORIA CLARK

Gloria Clark currently works as a Project Manager for the Patients Association, running projects for healthcare organisations directed at involving patients and improving care. She was formerly the elected Read More »

PHILLIPPA FARRANT

Phillippa has been involved with several charities over the years and has knowledge of neuromuscular conditions, along with experiences of meeting people from different sections of the Read More »

SARA HUNT

Sara Hunt is the CEO and founder of ALD Life, a charity supporting sufferers of the rare and terminal genetic brain disorder adrenoleukodystrophy (ALD). Both of Sara’s Read More »

CELINE LEWIS

Celine is a behavioural scientist, currently based at Great Ormond Street Hospital. Her research focuses on the lived experience of patients and families affected by rare genetic Read More »

NEIL MCCLEMENTS

Neil is a former trustee of Haemochromatosis UK, where he now serves as Chief Executive (appointed June 2019). He previously led a rare disease charity that supports Read More »

DR SUSAN WALSH

Susan has a science background with a degree in Biochemistry and a Ph.D. She joined the charity sector in 2002. She is the Head of Research and Specialist Read More »

JULIE WOOTTON

Julie has been a full-time volunteer for almost 20 years and has extensive experience of working with researchers, those delivering services to families and other non-profit organisations. Read More »

SARAH WYNN

Sarah Wynn has a PhD in Genetics from Imperial College London and nine years postdoctoral research experience. Sarah’s family are members of Unique. As Information Officer for Read More »

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