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European Organisation for Professionals and Patients with ALS

Acronym: EUpALS

General Information

Identification Code: 676314850923-62
Website: www.ALS.eu
Entity Form: ivzw
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 8/8/2023
Last Update: 2/9/2024

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:
Indic Phone: 32
Phone Number: 16239582

EU Office

Address: Vaartkom 17
Post Code: 3000
City: Leuven
Country: BELGIUM
Phone:
Indic Phone: 32
Phone Number: 16239582

Financial Data

Closed Year:
Start Date:
End Date:
Funding Sources:
  • Member's contributions
  • Other
Other Source Info: Member's contribution: EUpALS charges an annual symbolic membership fee of 1 euro/year to the its national ALS associations that are member of EUpALS. Other contribution: EUpALS offers Industry Partnership to companies. For 2022, the fees were set: - Bronze Industry Partnership: 1500 euro - Silver Industry Partnership: 2500 euro - Gold Industry Partnership: 5000 euro
Contributions:
    Total Budget: 89744
    Grants:
      Current Year:
      Grants:
        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

        Members25 Percent: 2
        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

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