Calling the EU to action after 200 years of Parkinson’s disease

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To mark the 200-year anniversary of the discovery of Parkinson’s disease on 11 April, the European Parkinson’s Disease Association (EPDA) held a high-level policy workshop in the European Parliament on 29 March. Donna Walsh, EFNA’s Executive Director, moderated the discussions, which focused on the cross-cutting challenges to timely diagnosis and individualised treatment and care, and what lawmakers in Brussels and Member States can do about it.

Together with Irish MEP and Chair of the Parliament’s Interest Group on Brain, Mind and Pain, Marian Harkin (ALDE), participants identified areas where the EU can add real value, including measures to reduce discrimination in the workplace and inequalities in access to treatment and healthcare. Participants also agreed that the EU can provide much-needed research funds for data collection, research into new treatments and new social services that improve quality of life. The European Commission was represented by Emmanuelle Grange, Head of Unit for Disability and Inclusion in DG Employment. Other respected speakers included Ronnie Shahmoon, a person with Parkinson’s diagnosed aged 29, as well as an entrepreneur, artist, inspirational author and passionate speaker on self-empowerment issues, and Prof Bastiaan Bloem, Medical Director of Parkinson Center Nijmegen in the Netherlands and Founder and Board Member of ParkinsonNet. Michela Tinelli, Assistant Professorial Research Fellow at the London School of Economics’ Health and Social Care department also featured.

“I have been inspired by the discussions here today. The extent of Parkinson’s in Europe – and the extraordinary impact it has on people with the disease and their families – makes this a European priority issue. I strongly believe that patient empowerment is the most effective way to manage this and other neurodegenerative conditions, and the EU can take a leadership role on this front.”

Commenting on the responsibility of the EU institutions in this area, MEP Marian Harkin said, “I have been inspired by the discussions here today. The extent of Parkinson’s in Europe – and the extraordinary impact it has on people with the disease and their families – makes this a European priority issue. I strongly believe that patient empowerment is the most effective way to manage this and other neurodegenerative conditions, and the EU can take a leadership role on this front.”

Left to right: Prof. Bastiaan Bloem, Marian Harkin MEP. Paula Gilmore, CEO of Parkinsons Association of Ireland.
Left to right: Prof. Bastiaan Bloem, Marian Harkin MEP. Paula Gilmore, CEO of Parkinsons Association of Ireland.

Following the event, senior EU officials and parliamentarians reiterated their support for the EPDA’s efforts and #UniteforParkinson’s global campaign – check out videos from Health Commissioner Vytenis Andriukaitus, Research and Innovation Commissioner Carlos Moedas, and MEP Heinz Becker here. As a next step, the EPDA together with EFNA continues to advocate for a stronger policy response from the EU and national governments to Parkinson’s disease and other neurodegenerative conditions. It does this by working closely with its members, the EU institutions and its partners to achieve faster progress for people with Parkinson’s and their families in the short, medium and long-term. For more information, visit the EPDA’s website or contact advocacy@epda.eu.com. 

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