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European Patients Academy

Archive for June 2016

Maria Piggin

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…

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Nóirín O’Neill

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…

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Kathy Oliver

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.

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Carole Hagan

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.…

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Margaret Graham McDonald

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…

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Tanya Collin-Histed

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…

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Karen Butcher

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.

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Lara Bloom

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…

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EUPATI and ABPI patient education conference

On 24 June, EUPATI UK teams up with the Association of British Pharmaceutical Industries (ABPI) to host a one-day patient education conference. Joining the speakers are Nicola Bedlington, European Patients’ Forum Secretary General and EUPATI Coordinator and Jan Geissler, EUPATI Project Director, as well as a number of prominent UK patients who are actively influencing…

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EUPATI at Alliance-Scotland Conference

On 23 May, EUPATI UK participated the Alliance-Scotland Annual Conference in Glasgow entitled “2 million Expert Voices: Listening, Learning, and Leading Change” where six EUPATI UK Fellows* contributed to a workshop “Medicines – Levelling the Playing Field”. The discussion highlighted EUPATI as an international example of driving innovation by empowering people (through education) to participate…

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