Governance

Rare Disease UK is overseen by the Management Committee who meets monthly. Membership of the Committee broadly reflects the multi-stakeholder membership of RDUK. The following people are members of the Management Committee:

• Alastair Kent - Director of Genetic Alliance UK (RDUK Chair)
• Steve Potter - Represents the Orphan Medicines Industry Group Partnership (RDUK Treasurer)
• Becky Purvis - Policy and Public Affairs Manager, Association of Medical Research Charities (RDUK Secretary)
• Dr Peter Corry - Paediatrician, Bradford
• Mark Barrett - Chair of the Orphan Medicines Industry Group
• Dr Marita Pohlschmidt - Head of Research, Muscular Dystrophy Campaign
• Laura Gilbert - Freelance Research Consultant
• Dr Stephen Jolles - Clinical Immunologist, University of Wales Hospital Cardiff (Advisor for Wales)
• Marie McGill - National Lead, Single Gene Complex Need Project (SGCN) (Advisor for Scotland)
• Dr Fiona Stewart - Consultant in Medical Genetics, Belfast City Hospital (Advisor for Northern Ireland)

Advocate attends Management Committee meetings as advisors.

RDUK is funded by an unrestricted educational grant from its pharmaceutical industry members. Membership is either through the Association of the British Pharmaceutical Industry’s (ABPI) Orphan Medicines Industry Group (OMIG) or through the Orphan Medicines Industry Group Partnership (OMIGP) which includes non-ABPI companies.

Download the RDUK Constitution here.