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European Patients Academy

Posts by eupati

Susan Walsh

Susan Walsh has over 14 years experience of working for patients’ organisations following on from a career in biomedical research. She is the director of Primary Immunodeficiency UK and Head of Research and Specialist Services at the CGD Society and is a patient representative on the UK Gene Testing Network Clinical and Scientific Advisory Group,…

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Sara Hunt

Sara Hunt is the founder and Chief Executive Officer of ALD Life, a charity supporting sufferers of the rare, terminal, and genetic brain disorder adrenoleukodystrophy (ALD). Sara has a professional background in administration, accountancy and desktop publishing, as well as personal experience of all aspects of the disorder. Sara is also a patient voice member…

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Lyndsey Hogg

Lyndsey Hogg has a background in public sector work. She is a volunteer support group leader for Endometriosis UK and is the volunteer patient representative for the EXPPECT Edinburgh Centre. She is also a lay member on the NICE Endometriosis Guidelines Committee and a patient representative on the Scottish Government Endometriosis Short Life Working Group.

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Gillian Fergusson

Gillian Fergusson has a background in physiotherapy and international development.  She has worked with disabled people’s organisations in various countries to develop services and advocate for the rights of disabled people. She is based at the Health & Social Care Alliance Scotland, working to increase people’s participation in improving the way health and social care…

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Helen Burchmore

Helen Burchmore began to be an active lay person involved in healthcare following a diagnosis of multiple sclerosis in 2005. In 2014 she was the ‘expert patient’ at the NICE HTA where alemtuzumab was licenced for use in the NHS, which is one of her proudest moments. She has spent over 10 years involved in…

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Helena Binder

Helena Binder was diagnosed with asthma at 27 and began volunteering with Asthma UK as part of their research and policy team. Asthma UK fund scientific research into asthma and people living with (or caring for people with) asthma are part of the process to identify which applications should be funded. It was Helena’s role…

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Russell Wheeler

Russel Wheeler is a trustee and patient advocate for the Leber’s Hereditary Optic Neuropathy Society (LHON Society). LHON is a rare disease of the optic nerve caused by a mutation in mitochondrial DNA typically leading to blindness over a very short period.

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Angela Stringer

Angela Stringer has been the Curator of the DMD Registry (UK Duchenne Muscular Dystrophy Registry managed by charity Action Duchenne) since 2007. Her work involves liaising between families and researchers for clinical trials.  Her experience comes from being a mother of a son with Duchenne for 27 years and she also is a trustee of…

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Jean Southey

Jean Southey has been working as a Co-ordinator for Patient and Carer Involvement in Dementia Research at the Sussex Partnership NHS Foundation Trust since 2012, having lived experience of supporting a relative diagnosed with a mental health condition. Prior to that she was a teacher of psychology.  Jean was diagnosed with Sjogren’s Disease in 2008…

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Jill Prawer

Jill Prawer was born with the ultra-rare condition Lipoprotein Lipase Deficiency. Jill wrote the only patient-friendly information sheets about the condition (now hosted on the HEART UK website) and in 2012 set up the LPLD community on RareConnect.  The site now has over 100 members. Being the ‘go-to’ patient with LPLD in the UK, Jill…

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