In this edition of "Meet the members", we interviewed Cathalijne van Doorne who used to be an ERN-RND ePAG patient advocate. She told us a bit more about being a patient advocate and why it's important to raise awareness of rare diseases.
Vice President European Federation of Neurological Associations (EFNA)
Previous board member of the European Reference Network – Rare Neurological
Member of the Pharmaco Risk Assessment Committee (PRAC) of the European Medicines Agency
About ten years ago I was diagnosed with a rare neurological disorder with the name ataxia. Many symptoms of ataxia can mimic those of being drunk – slurred speech, stumbling, falling, and incoordination.
My background as a medical biologist and my training by Eurordis gave me the tools to specialise in patient participation in research.
In 2018 I spoke at a meeting at the Euro Parliament about the outcomes from research that are most relevant to patients and how different those outcomes are from those chosen by other stakeholders. If you ask ataxia patients what they fear most, the majority will tell you that it is to loose the ability to speak or see. Researchers, however, choose the distance patients can walk. Since my talk I learned that a lot of pharma have adopted the ataxia example to educate their colleagues of the importance of patient involvement in their work.
It is really important to raise awareness about rare diseases. Patients experience stigma every day. My suggestion is to start small and begin close to your home. Explain your disorder to your neighbour, to the cashier of the supermarket, to the bakery, etc. My experience is that people are really nice, understanding and helpful when they are informed.
You are an ERN-RND full member or affiliated partner and would like to participate? Please write to communicationERN-RND@med.uni-tuebingen.de