European Organisation for Professionals and Patients with ALS
Acronym: EUpALS
General Information
Identification Code: 676314850923-62
Website: [object Object]
Entity Form: ivzw
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 8/8/2023
Last Update: 2/9/2024
EP Accredited Number: 0
Mission & Interests
Goals: EupALS is the umbrella organisation that unites the national ALS associations of Europe. We take the interests of European patients 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 patients 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
Interests Represented: Does not represent commercial interests
Interests:
- Public health
- Research and innovation
Levels of Interest:
- european
Activities
Main EU Legislative Proposals: - 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
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: Vaartkom 17
Post Code: 3000
City: Leuven
Country: BELGIUM
Phone: [object Object]
EU Office
Address: Vaartkom 17
Post Code: 3000
City: Leuven
Country: BELGIUM
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: EUpALS is partner in EU HORIZON project Real4Reg (project number 101095353) that started January 1 2023 and runs untill December 31 2026.
The received amount in the running year 2023 is a prepayment of our total budget of 62500 euro in this project.
Membership Information
Members10 Percent: 0
Members25 Percent: 2
Members50 Percent: 0
Members75 Percent: 0
Members: 2
Members F T E: 0.5
Structure
Structure Type: Structure
Is Member Of: On the date of application '(August 10, 2023) the following 28 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
APELA Portugal
ARSLA France
ConSLAncio Italy
EAMDA Slovenia
Fundacio Miquel Valls Spain
Fundacion Francisco Luzon Spain
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
Ulla-Carin Lindquist Stiftelse för ALS Forskning Sweden
In addition, EUpALS has the following partners:
Academic partners: https://als.eu/academic-partners
Industry partners: https://als.eu/node/131
Organisation Members: - 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