On September 6th 2018, four European patient organisations (European Patients’ Forum (EPF), European AIDS Treatment Group (EATG), EURORDIS-Rare Diseases Europe and Alzheimer Europe and a research foundation (Fondation Sant Joan de Déu) organised a webinar on patient engagement on medicines research and development. The webinar was attended by more than 100 interested people, many of them patient representatives.
JOINT STATEMENT on the signing of a Memorandum of Understanding
Brussels, September 13th, 2018
The two Innovative Medicines Initiative (IMI) consortia PARADIGM, Patients Active in Research and Dialogues for an Improved Generation of Medicine (co-led by the European Patients’ Forum and the European Federation of Pharmaceutical Industries and Associations) and PREFER, Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (co-led by Uppsala University and Novartis) have established a Memorandum of Understanding aiming to enhance the cooperation and collaboration between the two projects.
Chris Roberts lives in north Wales and was diagnosed with early onset mixed dementia (vascular and Alzheimer’s) in 2012, in his early fifties. Since the diagnosis, Chris and his wife Jayne have been actively involved in raising awareness of dementia and have inspired many other people to continue to live life to the full with dementia. Chris is an ambassador for research in the UK, Vice Chair of the European Working Group of People with Dementia (EWGPWD) and is a co-founder and member of the 3 Nations Dementia Working Group.
We talked to Chris and Jayne about their participation, together with the other members of the EWGPWD, in a consultation about the PARADIGM project on 27-28 June in Brussels.