Shaping the future: policy responses to rare neurological challenges.
Since February 28 th is the rare disease day in the whole of Europe this is an extremely busy month.
Although there are a lot of activities I managed to take part in the event as a representative of the EuMGA, thus as a representative of all our members and your members.
There were other representatives of other rare diseases. We all had the opportunity to speak about are disease, the impact on our lifes and our unmet needs. There were a lot of people participating including 6 MEPs. They all advocate for patients living with a rare disease.
There was the support of Mr. Tomislav Sokol (Croatia), Mrs. Tilly Metz (Luxemburg), Mrs. Margeretabde la Pisa Carricion (Spain), Mr. Ondrej Dostàl (Czech Republic) and another MEP Mrs. Romana Jerkovic (Croatia). The opening remarks were made by MEP Billy Kelleher (Ireland).
EFNA made many recommendations that were seriously considered and for which some gave their support to work for in the future. Cross -border treatments and care were also very important to them and a compelling item requiring improvement.
There was conviction of the need, that patients with rare conditions should have a better outlook, this was evident from what they said despite other important items currently having to be confronted. Access to treatment and care should be the same everywhere in Europe. The general trend was one of hope for the future improvement.
There was the opportunity to have a conversation with Mr. Tomislav Sokol MEP from Croatia who supported us with our coalition “AllUnitedForMG”. He was one of our hosts at our former visit to the European Parliament and will be. He invited us again. So European Parliament here we come!
EuMGA President / Treasurer
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