MRCC Structure – old

MRCC Oversight Board

The purpose of the Oversight Board is to govern the MRCC effectively and, in doing so, to build public and stakeholder confidence that their health and healthcare is in safe hands. The board comprises of:

Rachael Barber – RMCH Medical Director, Julia Birchall-Searle – RMCH Director of Nursing & AHP, Emma Gilbey – Programme Director for Long Term Conditions, Manchester Local Care Org, Kashif Haque – Director of Change, Innovation and Improvement WTWA, Celia Hogan – Infectious Diseases Consultant, Helen Ibbott – LCOs Director of Strategy, Matthew Makin – NMGH Medical Director, Sohail Munshi – LCOs Chief Medical Officer,Charlotte Skitterall – CSS Group Chief Pharmacist, Bill Newman – Clinical Director NW GMSA, Richard Body – Group Director of Research and Innovation, Ian Daniels – SM MCS Director of Business and Innovation, Stephen Dickson – WTWA CEO, Jennifer Hughes – Group Deputy Director of Transformation, David Kay – SM MCS Director of Finance, Fiona Lalloo – Clinical Head of Department Genetics, Stuart Moore – MRI Director of Strategy, Nichola Garde – BBC Creative Diversity and Disability Lead and Patient Representative, Sarah O’Shea – CSS Medical Director, Michael Pemberton – Medical Director Dental Hospital, Tom Rafferty – Group Director of Strategy, Helen Roberts – MFT CSS Associate Director of Integration and Transformation, Colette Inkson – Innovation and Partnerships Manchester, Manchester NIHR BRC & CRF at Manchester University NHS Foundation Trust.

MRCC Advisory Panel

The advisory panel provides a non-executive advisory function to the Manchester Rare Conditions Centre (MRCC). Members help to guide the MRCC strategy, projects, and programs. Membership is reviewed every two years to ensure that the Panel’s expertise is relevant to the changing priorities of the MRCC. The panel comprises of:

Prof Angela Davies – University of Manchester, Angela Rowe – MFT Charities, Dr Catherine Breen – MFT Clinical Geneticist, Dr Iain McLean – Managing Director of Research and Innovation, Dr Kate Hillman – Consultant Renal Physician, Dr Lynne Webster – Director of Research Governance and Quality, Dr Rhona MacLeod – Manchester Centre for Genomic Medicine, Elizabeth Coulson – MFT Charities, Fin McNicol – Group Director of Communications, Ian Daniels – SM MCS Director of Business and Innovation, Kathryn Ascroft – Group Strategy Manager, Katie Lees – Senior Development Officer University of Manchester, Laura De Peyer – Senior Philanthropy Manager University of Manchester Nichola Garde – BBC Creative Diversity and Disability Lead and Patient Representative, Prof Bill Newman – Clinical Director NW GMSA, Prof Dian Donnai – Manchester Centre for Genomic Medicine, Prof Graeme Black – Manchester Centre for Genomic Medicine, Prof Indi Banerjee – RMCH Associate Medical Director, Prof Ray O’Keefe – University of Manchester, Rachel Isherwood – Philanthropy Manager University of Manchester, Rachael Faulkner – Clinical Psychologist Manchester Centre for Genomic Medicine, Sarah Wynn – CEO Unique, Scott Noble – WTWA Strategy Manager, Sue Baker – Rare Care Centre Perth Children’s Hospital, Tanya Hamid – MFT Director of Charity, Tom Rafferty – MFT Director of Strategy, Victoria Grant – Manchester Museum, Videha Sharma – University of Manchester

We R Rare

We R Rare Patient, Carer and Family Steering Group

 

Did you know that rare conditions affect more than 3.5 million people across the UK? Or that two-thirds of rare conditions can cause chronic disability? What about the fact that most rare conditions do not yet have a treatment? We’re working to change that and improve the lives of people with rare conditions, of all ages.

To make this change a reality, we need to work in partnership with people who have personal experience of a rare condition – whether they have a rare condition themselves or a carer or family member. Their unique insights and perspectives will help us to ensure the work that we do is relevant, acceptable and meets the needs of people with rare conditions.

 

What is the We R Rare Patient, Carer and Family Steering Group?

In collaboration with the Manchester Biomedical Research Centre and Vocal, we launched the new ‘We R Rare Patient, Carer and Family Steering Group’ in February 2024 – our first meeting coincided with Rare Disease Day 2024!

The Steering Group is made up of 11 patients, carers and family members with direct experience of rare conditions across Manchester and North West England. Members use their experiences of rare conditions to:

  • Shape the research, services, and support available to people living with rare conditions.
  • Provide strategic advice to the Manchester Rare Conditions Centre and the Manchester Biomedical Research Centre.
  • Influence the latest research projects for discovering, studying, and treating rare conditions.
  • Raise awareness of rare conditions and the challenges faced by those living with them.

Members will soon be writing regular blogs to share updates on what they’ve been up to – watch this space to find out more soon!

 

Interested in getting involved and using your unique perspectives?

If you have personal experiences of rare conditions, we need your help to improve research and healthcare services and help patients in the future.

We currently have two ways for you to get involved:

  • We’re looking to expand the membership of the We R Rare Steering Group to bring in a broader mix of experiences and ensure under-represented and under-served populations have their say
  • Join the Rare Conditions Network where you’ll find out about different opportunities to get involved across a variety of projects. Some may be one-off opportunities and others will be looking for longer-term involvement but it’s completely up to you how much you’d like to get involved,

 

If you have any questions or would like further information about getting involved, please get in touch with Sinduja (sinduja.manohar@mft.nhs.uk) and she’d be happy to help!