Patient Power in the year 2021

European Patient Representatives are looking ahead to the new year

Last year was challenging for everyone – no question about it. But that is exactly why we want to look forward now, to turn our gaze to the future and start the year 2021 – full of hope and the urge to make a difference.


To give you an insight into this attitude towards the new year in regard to “Patient Power”, we have made a motivational video. In this clip nine patient representatives from nine different countries all around Europe are giving their statements in their mother tongue (subtitles are in English). They are talking about 2020 and giving a hopeful outlook for 2021.
Take a look and let yourself get inspired. In this sense: Happy New Year to everyone!




Thanks for your statements:

  • Ines Alves – Patient expert in Rare bone diseases & patient representative in ERN BOND, Portugal
  • Peter Ashley – President Cure Myotonic Dystrophy, United Kingdom
  • Antonino Caridi – Chairman of the CDKL5 Alliance & Board Member of the CDKL5 Insieme verso la cura, Italy
  • Jordi Cruz – Director MPS, Spain
  • Ingrid de Groot – Chair Myositis Working Group, Netherlands
  • Marie-Christine Ouillade – SMA Europe, France
  • Jana Popova – EAMDA, Bulgaria
  • Dirk Rohde – Head and Neck-Cancer Blogger, Germany
  • Robert Veres – Asociatia Werdnig Hoffman, Romania





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