“Time to improve the life of people living with ALS | Policy recommendations for improved diagnosis, care, and treatment”
7. Sep 2023 — Register Here
Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease, affecting 32.000 adults in Europe (i.e., the European Union countries, plus the United Kingdom). ALS progresses rapidly, relentlessly, and irreversibly, giving people living with ALS a life expectancy of 2-5 years after the onset of the symptoms.
The EU ALS Coalition was launched in March 2023 at the European Parliament. It brings together multi-disciplinary experts from across Europe who have drafted a policy paper(including a series of recommendations) suggesting solutions for improved diagnosis, care and treatment of people living with ALS in Europe. This paper will be launched during the event.
The EU ALS Coalition is delighted to invite you to the event “Time to improve the life of people living with ALS | Policy recommendations for improved diagnosis, care, and treatment” on 7 September 2023.
The event will be co-hosted by MEP Tomislav Sokol (EPP, Croatia) and Istvan Ujhelyi (S&D, Hungary) at the European Parliament (Brussels, Belgium) from 15.00 to 17.00.
An expert panel will share the conclusions of the policy paper and exchange views. So far, confirmed speakers are:
- MEP Tomislav Sokol (EPP, Croatia)
- MEP Istvan Ujhelyi (S&D, Hungary)
- Prof. Dr. Med. Julian Grosskreutz, Co-Chair of the EU ALS Coalition
- Olivier Goy, Patient advocate & Co-Chair of the EU ALS Coalition
- Prof. Vincenzo Silani, Director of the Department of Neuroscience and Laboratory of Neuroscience at the IRCCS Istituto Auxologico Italiano
- Evy Reviers, Chairwoman, EUpALS
- Josh Cohen and Justin Klee, Co-CEOs and Co-Founders, Amylyx Pharmaceuticals
- Other high-level speakers, to be confirmed
The event will be followed by a networking reception from 17.00 to 18:00.
The event agenda will follow soon.
EU ALS Coalition – Official Invitation
**This is a EUCOPE-member affiliated event (Amylyx Pharmaceuticals)