Ehlers-Danlos Support UK are delighted to announce that our COO, Lara Bloom has been accepted onto the European Patients Academy on Therapeutic Innovation (EUPATI) Patient Expert Training Course. 300 applied internationally and only 55 people were accepted so we are very excited about Lara having patient advocate expert-level training in medicines research and development, specifically tailored for us.This is an excellent step in raising awareness with the medical profession and allowing EDS UK to drive forward changes for EDS patients. The EUPATI Training Course will allow Lara and the charity to apply knowledge and skills acquired via three main areas: Patient Representation: EUPATI Patient Experts could actively engage in representing a patient perspective in the medicines development process by interacting with scientific committees, HTA agencies, industry, regulatory bodies, academia and other relevant stakeholders. Communication: EUPATI Patient Experts could contribute to raising awareness on patient involvement in medicines R&D amongst lay patients, hard-to-reach patients and the lay public. Education/Training: EUPATI Patient Experts could play the role of facilitators/trainers by engaging in activities supporting the dissemination of the education and information programmes for audience 2 - patient advocates, and audience 3 – lay patients and the general public in their countries through their patient communities and networks. This video shows the Executive Director of the European Patients Forum and Coordinator of EUPATI, outlining why it is essential that patient advocates become qualified partners in medicines research and development to improve patient outcomes.
Posted on: Wed, 10 Sep 2014 20:00:02 +0000
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