Introduction A collaboration of the Patient Consumer Group [part of National Research Institute for Health Research (NIHR), Clinical Research Network] with the pharmaceutical company Eli Lilly. Where in the...
Introduction A case report on Phase I patient involvement into study design through interviews where they share their views on the disease and the cutaneous symptoms. The information that...
Note: This webinar took place on Monday 30th January 2017 – 17:00 to 18:30 CET. You can find the presentations used during the webinar below. Webinar introduction The Council for International...
Transcription I’m François. I’m 51. I work for the European organisation for rare disease EURORDIS, where my main role is to help patients navigating through the different procedures for...
Introduction A collaboration of Genzyme, International Pompe Association (IPA); UK, Dutch, and US Pompe patient organisations, Erasmus Medical Center and Duke University to establish appropriate measures to ensure the...
Transcription My name is Karen Facey. I am a statistician by training. I’ve worked in drug development, medicines regulation and health technology assessment. Since being involved in health...
Part of a different era, activist or patient advocate? I started in patient advocacy in 1991. We didn’t call it patient advocacy back then. We got buckets of glue...
