Who are the EUPATI UK Training Fellows?
EUPATI offers 100 patients from across Europe the chance to join a 14-month Patient Expert Training Course. In the UK, 21 applicants were accepted in two cycles with 16 undertaking studies in October 2014, and another five starting in September 2015. All course participants will graduate together in December 2016 at an official ceremony in Brussels. EUPATI UK Fellows are patients, patient organisation representatives, patient advocates, carers or family members.
The course offers a blended learning experience with modules and assessments completed online and complemented by two week-long face-to-face programmes. Topics covered include the discovery of medicines and the planning of medicines development; non-clinical testing and pharmaceutical development; exploratory and confirmatory clinical development; clinical trials; regulatory affairs, medicinal safety, pharmacovigiliance and pharmacoepidemology; and health technology assessment principles and practices.
Course content is developed by the EUPATI consortium and a list of partners involved can be found here.
Upon completing their studies, EUPATI Fellows become patient experts in the medicines research and development process, and we invite medicines research and development partners to use their knowledge to ensure a patient perspective in early research design, clinical trial management, ethics committee reviews, regulatory committees and much much more.
If you would like to contact one of the EUPATI UK Fellows please complete the form below.
Meet the EUPATI UK Training Fellows
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,…Read More
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…Read More
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.Read More
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…Read More
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…Read More
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…Read More
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…Read More
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…Read More
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…Read More
Maria Piggin has paroxysmal nocturnal haemoglobinuria (PNH). Previously a commercial and criminal lawyer, she now works at UCLPartners (an academic health science network in London) as a Patient Involvement Facilitator where she assists acute hospital trusts around London and Essex to organise Patient Safety Collaboratives to involve patients in their Patient Safety Programmes. She has…Read More
Nóirín O’Neill works as a medical negligence solicitor. In 2004, Nóirín was diagnosed with a rare form of leukaemia which affects one in a million people in Europe. Her treatment was successful and she then became a high profile and influential cancer survivor, ePatient and patient advocate. She is in the Patient Think Tank in…Read More
Kathy Oliver is Chair and founding Co-Director of the International Brain Tumour Alliance (IBTA), a worldwide patient organisation focussing on advocacy and awareness-raising. She is involved in a range of high-level projects/committees in Europe addressing brain tumour and rare cancer issues and is a frequent plenary and session speaker at international neuro-oncology and cancer conferences.Read More
Carole Hagan has a background in education, working most recently as an Inclusion Consultant. Carole is a parent of a young adult who has Tuberous Sclerosis Complex and is a member of the Research Committee of The Tuberous Sclerosis Association UK (TSA). “Studying medicines research & development with EUPATI was challenging, inspiring, motivating and rewarding.…Read More
Margaret Graham McDonald sat for 10 years as a Lay Member on a West of Scotland Research Ethics Committee based in Glasgow Royal Infirmary. She also held the same position for eighteen months on The Scotland A Research Ethics Committee, whose remit included applications to work with adults with incapacity, whose vulnerable status required an…Read More
Tanya Collin-Histed became involved in the Gaucher world in 1996 when her daughter Maddie was diagnosed with Type III Gaucher disease. A year later she became a volunteer for the Gauchers Association and started to support patients and their families with Type II and III Gaucher Disease. Today she is the CEO of the UK…Read More
Karen Butcher runs the national Support Group for people with Charcot-Marie-Tooth disease, CMT United Kingdom. She has the condition myself, as do her children. Her work involves giving support, advice and information to newly diagnosed people, helping people with day to day issues with having CMT, and much more.Read More
Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders. Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks…Read More