In 2008 EPU joined EFNA (European Federation of Neurological Associations) and EURORDIS (European Organisation for Rare Diseases).
Report from Els Symons visiting EFNA in Brussels, November 2008
I had a very good 2 days in Brussels with the EFNA. They are an inspiring organisation and I was especially impressed with the knowledge and enthusiasm of their chair, Mary Baker from the UK.
We, the EPU, were warmly welcomed as a new member. I gave a talk about the EPU and about Postpolio Syndrome. They were very impressed by the PPS story and Mary Baker is going to think about how they can create more awareness for PPS.
They also recognise the problems we face with the EPU as a starting organisation.
Now, next weekend, there happens to be a conference in Brussels about this exact issue. The EFNA is organising this 3 days event with the Medtronics Foundation, called: “Patient Link Workshop”. All the expenses are paid for, so it does not costs us a penny. They were able to squeeze me in at the last moment and I am certainly going. It has a lot of issues that can be very beneficial for us.
The Medtronic Foundation www.medtronic.com/foundation might also be useful to us in the way of money. They give grants to organisations like the EPU. It looks really worthwhile.
The PatientLinkWorkshop from the Medtronic Foundation + EFNA in Brussels was very good, excellently organised, good speakers, luxury, very weary, inspiring etc.
I learned a lot about Creating Awareness, Health Technology Assessment and Fundraising.
I networked a lot and told everybody about PPS and the EPU (= creating awareness).
I talked to 3 different persons from the Medtronic Foundation, trying to convince them to “adopt Postpolio” and donate money to the EPU.
They are going to bring me in contact with the Dutch representative of the Medtronic Organisation to talk about this. If I don’t succeed that way, then Mary Baker from the EFNA is going to try to get money for us from them under the umbrella of the EFNA; they finance the EFNA and since we are part of them now, we could succeed that way.