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17 Results found for "projects and research projects european patient ambassador programme epap being patient ambassadors blogs"

  1. News > Why I love being a patient ambassador

    My name is Betty Frankemölle and I live in The Netherlands, in a small town near the North Sea coast. I have always a lot of things to do. I have been a volunteer at the Dutch Lung Foundation for over...

  2. News > Summer Training for Young Patient Advocates

    The European Patient’s Forum (EPF) is offering an opportunity for young people with a chronic long-term condition aged 18-30 to attend a summer training school for young patient advocates. The training...

  3. News > Patient representatives wanted for stakeholder discussions on the value of data at EU Parliament

    eTRIKS, an Innovative Medicines Initiative (IMI) project, is looking for 10-12 patient representatives to take part in an event that brings stakeholders together to discuss the value of research data...

  4. News > How do people get started in patient involvement?

    We have interviewed Daniel Russell, one of our recent patient ambassadors to find out, what got him involved.   How did your involvement as a patient representative begin? It was towards the end of the...

  5. News > Invitation to all ambassadors to share experience

    Have you been involved in an activity recently, such as a research project or attending a conference or maybe you attended a workshop or have given a presentation? Then we would like to hear from you...

  6. News > Longfonds new EPAP partners in the Netherlands

    Here is why Longfonds (the Dutch Lung Foundation) have decided to become EPAP partners: Longfonds believes that people with a lung disease have a unique perspective on the impact of having a lung disease...

  7. News > New Patient Advisory Group (PAG)

    Three years ago we formed the first PAG from the first wave of patient ambassadors to have completed EPAP. The initial 14 members worked for three years with ELF to drive EPAP. Last year they undertook...

  8. News > European Ambassadors in focus group as part of EU project

     We were approached in May by our partners, the International Alliance of Patients ’Organisations (IAPO), as part of their involvement in GetReal, a research project funded by the Innovative Medicines...

  9. News > Story telling for rare disease health

    The theme for the Rare Disease Day on 29 February, 2016 is 'Patient Voice’. Emma Rooney, who is a patient ambassador, who recently joined our new PAG, has compiled a list of patient stories from all different...

  10. News > New RARE Toolkit on Social Media

    Global Genes has released a new toolkit on How to Promote Your Rare Disease Story Through Social Media. Most rare diseases are not well understood and often there is no cure or treatment. This means that...

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