The EUpALS Annual General Meeting, Tuesday June 23, 09h00-11h30
The meeting takes place in hotel Novotel Madrid Campo de las Naciones, C. de Amsterdam 3, Barajas, 28042 Madrid.
This location is close to the IFEMA Palacio Municipal that is the venue of ENCALS 2026.
Minutes of the EUpALS Annual General Meeting (AGM) 2026
Place: Hybrid meeting:
- In-person at Novotel Campo de las Naciones, Calle de Amsterdam 3, Madrid (Spain)
- webmeeting
Date: Tuesday June 23, 2026 ; 09h00-12h00 Madrid time
Attended: See list under point 3
Minutes: Dirk De Valck (Staff EUpALS)
- Welcome (Evy Reviers, Chairwoman)
- Welcome on behalf of the EUpALS Board of Directors
- Highlighting the dedicated support of Novartis
- Briefly going over the agenda
- EUpALS today (Evy Reviers, Chairwoman)
- Today, 30 member ALS/MND Associations out of 22 European countries are member of EUpALS
- Status quo since last year
- Academic partnerships with TRICALS and ENCALS; close collaboration with the European Academy of Neurology and with the Int. Alliance of ALS/MND Associations
- Today, EUpALS has 13 Industry Partners
- In alphabetical order: Argenx, Biogen, Corcept, Ferrer, Italfarmaco/EFFIK, IONIS, Novartis, Otsuka, Prilenia, Regeneron, VectorY, Worldwide Clinical Trials, Zambon
- Who attended the AGM 2026 (Evy Reviers, Chairwoman)
The following 12 member ALS/MND Associations were represented (marked X), with voting right
| AISLA Onlus (Italy) | X |
| ALSA Czech Republic | |
| ALS Liga Belgium | X |
| ALS Association Republic Srpska, Bosnia and Herzegovina | |
| ALS Association Switzerland | |
| ALS-Fonden (Sweden) | |
| ALS-Mobil (Germany) | X |
| ALS Norway Foundation | |
| ALS Patiëntenvereniging (The Netherlands) | X |
| ALS/MND Association Turkey | X |
| ALS-tutkimuksen tuki ry (Finland) | |
| Alt om ALS (Sweden) | |
| APELA (Portugal) | |
| ARSLA (France) | |
| ConSLAncio (Italy) | X |
| EAMDA (European umbrella) | |
| Foundation ALS The Netherlands | |
| Fundacion Miquel Valls (Spain) | X |
| Fundacion Francisco Luzon (Spain) | X |
| Hellenic ALS Association | X |
| Irish Motor Neurone Disease Association (IMNDA) | |
| LIVE NOW Russia | |
| MDA Hellas (Greece) | X |
| MND Association England Wales N-Ireland | |
| MND Iceland | X |
| Motus Vita (Latvia) | |
| Muskelsvindfonden (Denmark) | X |
| Muscular Dystrophy Association Slovenia | |
| Post Fata Resurgo (Italy) | |
| Research Motor Neurone (Ireland) |
The following Industry Partners attended the AGM 2026 as observer without voting right: Biogen, Ferrer, Novartis, Otsuka, Prilenia, Regeneron, VectorY, Worldwide Clinical Trials, Zambon.
4 .EUpALS 2025 in general (Evy Reviers, Chairwoman)
- EUpALS Mission and Vision presented using a visual banner.
- EUpALS 2025 in numbers
In 2025 EUpALS invested resources and time in:
- Launching new website: 364 hours
- Updating website: 275 hours
- Managing e-mail contacts: 772 hours
- Production Newsletters: 160 hours
- Activities Patients and Carers Expert Board : 164 hours
- Activities Scientific Expert Board: 208 hours
- Meetings with Industry Partners : 576 hours
- Managing partnership in EU project Real4Reg: 384 hours
- Managing partnership in EU project HEREDITARY: 362 hours
- New EUpALS website presented: www.ALS.eu
- 4 quaterly published EUpALS Newsletters presented
- EUpALS project on mental wellbeing presented
- EUpALS since 2023 registered in EU Transparency Register:
- EUpALS also in 2025 recognized as communication partner for EU institutions
5.Activity report 2025 of the EUpALS Patients and Carers Expert Board (Dirk De Valck, Staff)
- Limore Noach and Gudjon Sigurdsson co-chair the EUpALS PCEB
- Actual composition of the EUpALS PCEB
- Thank you for many years of commitment
- Stephane Berghmans (ALS Liga Belgium)
- Welcome new members
- Valerie Berlaimont (ALS Liga Belgium)
- Louise Gunning-Schepers (ALS Patiëntenvereniging, The Netherlands)
- Input from a patient perspective provided for
- Clinical trial protocols
- of EUpALS Industry Partners: from first-in-human to phase 3
- of academic partner: specific product and masterprotocol
- Early Access Program initiative of an Industry Partner
- Educational campaign ‘The ALS patient journey’ of the ERN EURO-NMD
- Join the EUpALS PCEB
- Call for nominations continuously open
- Up to 2 pALS and/or cALS can be nominated by each EUpALS Member Association
6.Activity report 2025 of the EUpALS Scientific Expert Board (Evy Reviers, Chairwoman)
- Evy Reviers and Christian Lunetta co-chair the EUpALS SEB
- Actual composition of the EUpALS SEB
- EUpALS is represented in bi-weekly TRICALS Executive Committee meetings
- EUpALS PCEB co-drafted the position paper ‘Patient Reported Outcomes in ALS clinical trials’
- EUpALS authorship in scientific publications: Certificate of Achievement received in 2025 for publication of EAN guideline for the management of ALS, in European Journal of Neurology 2024
7.EUpALS partnerships in EU Horizon projects (Dirk De Valck, staff)
- EU Horizon project Real4Reg
- AI methods for Real World Data analysis in regulatory decision making and health technology assessment
- Runs 2023 – 2026
- Overview of project partners, expertise and roles
- Real4Reg publication in Health Research Policy and Systems 2025 highlighted
- Outline of aims, objectives and methods of the project
- Real4Reg publication in Clinical and Translational Science 2025 highlighted
- Results of stakeholder survey on Real World Evidence in the regulatory process
- Basis for development of modular e-learning
- Real4Reg use case ALS: where are we?
- Description of the ALS study population in national health registries from Finland, Denmark and Portugal completed
- Development of synthetic placebo arm (digital twins) for ALS clinical trials: in progress
- Invitation for Real4Reg Final Symposium 3-4 November 2026 in Lisbon (Portugal)
- EU Horizon project HEREDITARY
- Heterogeneous semantic data integration for the gut-brain interplay
- Runs 2024 – 2027
- Overview of project partners, expertise and roles
- HEREDITARY use case ALS
- ALS disease phenotyping and prognosis evaluation
- In semantic data sources of individual universities of Padua and Turin
- In combined semantic data sources of universities Padua and Turin
- ALS disease phenotyping and prognosis evaluation
- HEREDITARY Communication and Dissemination activities, involving EUpALS
- World Café at Brain Innovation Days 2025 highlighted
- Invitation to HEREDITARY Advocacy Workshop June 30 2026
8.EUpALS financial report fiscal year 2025 (Evy Reviers, Chairwoman on behalf of Limore Noach, Treasurer)
- EUpALS income 2025 was total +179.279,86 euro, composed of
- Annual ALS/MND Associations member fees
- 17 Industry Partnerships
- 2 EU Horizon project partnerships
- 1 donation
- Bank interest
- EUpALS expenses 2025 were total -78.283,55 euro, composed of
- Administration
- Daily operations and office supplies
- Insurances
- Website hosting
- Staff
- EUpALS Annual General Meeting and Round Table at ENCALS 2025 Turin
- Travel cost EUpALS PCEB to attend Annual General Meeting and Round Table 2025
- EUpALS financial result 2025
- Substantial positive result
- Conservative spending
- Endorsement by the EUpALS Annual General Meeting 2026
- First approval by Hellenic ALS Association (Aspa Karampela)
- Second approval by ALS Patiëntenvereniging The Netherlands (Louise Gunning-Schepers)
- Everybody was in favor
- Nobody was against
9.EUpALS Member Associations activities 2025
- The following EUpALS Member Associations presented highlights of their 2025 activities:
- ALS Liga Belgium
- ALS Patiëntenvereniging (The Netherlands)
- ALS-Mobil (Germany)
- conSLAncio (Italy)
- Italian ALS Coalition
- Hellenic ALS Association (Greece)
- Fundacion Luzon (Spain)
- MDA Hellas (Greece)
- Muskelsvindfonden (Denmark)
- Stichting ALS The Netherlands
10.EUpALS Industry Partners activities in ALS
- The following EUpALS Industry Partners presented their activities in ALS:
- Ferrer / Prilenia
- Novartis
- Regeneron
- VectorY
- Worldwide Clinical Trials
10.Closing (Evy Reviers, Chairwoman)
With special thanks to the in-person attendees of the EUpALS Annual General Meeting 2026