European Organisation for Professionals and People with ALS
Budget
€220,000
EP Access
0
accredited persons
Staff
1
0.75 FTE
EU Grants
€5,702,967
Mission & Goals
EupALS is the umbrella organisation that unites the national ALS associations of Europe. We take the interests of European people with ALS (Amyotrophic Lateral Sclerosis) to heart. We create equal rights for all European people living with ALS and provide them better access to research and information about it. Objectives - EUpALS defends the rights of all European people with ALS - EUpALS creates awareness on a European scale - EUpALS improves access to and information about ALS clinical research - EUpALS creates the same rules for ALS clinical research across Europe
EU Legislative Interests
- EU regulatory and HTA procedures for new ALS therapies - Legal regulation of genetic testing in Europe - Call for a comprehensive European strategy on Rare Diseases - RareDataEU: Planning and developing Real World Data (RWD) and registries for Rare Diseases in Europe
Communication Activities
- Care for persons with Amyotrophic Lateral Sclerosis (ALS), Februari 8 2023, European Parliament Brussels - Kick-off event of the European ALS Coalition, September 7 2023, European Parliament Brussels - Conference on Rare Diseases and the European Reference Networks - side event Amyotrophic Lateral Sclerosis: the perspective of patient associations - in organisation of the European Economic and Social Committee, October 10-11, Bilbao - Paediatrics in the review of the Pharmaceutical Package, October 26 2023, European Parliament Brussels - Policy session on Genetic Screening, March 20 2024, European Parliament Brussels
Interests Represented
Does not represent commercial interests
Member Of
- European Reference Network for Neuromuscular Diseases (EURO-NMD) - The Research Initiative to find a Cure for ALS (TRICALS) - The European Network of Centers for ALS (ENCALS) - International Alliance of ALS/MND Associations
Organisation Members
The following 30 national ALS associations from 22 European countries are member of EUpALS: ALSA Czech Republic ALS Liga Belgium AISLA Onlus Italy ALS Association Republic Srpska, Bosnia and Herzegovina ALS Association Switzerland ALS/MND Association Turkey ALS Mobil Germany ALS Patiëntenvereniging The Netherlands ALS-tutkimuksen tuki ry Finland ALT om ALS Sweden APELA Portugal ARSLA France ConSLAncio Italy EAMDA Slovenia Fundacio Miquel Valls Spain Fundacion Francisco Luzon Spain Hellenic ALS Association Greece Irish Motor Neurone Disease Association (IMNDA) LIVE NOW Russia MDA Hellas Greece MND Association England, Wales & N-Ireland MND Iceland Motus Vita Latvia Muskelsvindfonden Denmark Muscular Dystrophy Association Slovenia Post Fata Resurgo - Italy Research Motor Neurone (RMN) Ireland Stichting ALS The Netherlands Stiftelsen ALS Norsk Stottegruppe Norway ALS Sweden In addition, EUpALS has the following partners: Academic partners: https://als.eu/academic-partners Industry partners: https://als.eu/node/131
Additional Information
EUpALS is partner in EU HORIZON projects: - Real4Reg (project number 101095353) that started January 1 2023 and runs untill December 31 2026. - HEREDITARY (project number 101137074) that started January 1 2024 and runs untill December 31 2027.
Commissioner Meetings
No recorded meetings with EU commissioners.