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!
Lutgarde Allard,
EuMGA President / Treasurer