EUpALS

06/05/2026

EUpALS is partner in EU Horizon project .

Real4Reg aims to promote the use of Real-World Data (RWD, e.g. national healthcare registers and claims data) and new technologies (e.g. artificial intelligence or machine learning) to support regulatory and health technology assessment (HTA) decisions about medicines. Please visit website https://www.real4reg.eu/.

At the end of 2026, the project will have a Final Symposium where major findings and lessons learned will be discussed. The program includes a patients dedicated session with RWD as the main topic.

If you are a patient, a patient organisation representative or a patient advocate you can help us decide the theme.

Scan the QR code or go to mentimeter.com and insert the code 5196 8269 and select one of the available options.

04/05/2026

EUpALS Industry Partner Corcept Therapeutics announces an update of the Phase 2 DAZALS study of Dazucorilant, demonstrating two-year overall survival benefit in patients with ALS.

Read the attached press release.

14/04/2026

EUpALS Industry Partner Novartis announces completion of enrollment of the Phase 2 ASTRALS trial with VHB937 in ALS.

Read the attached Community Statement that informs about the number of patients enrolled, how VHB937 works, and the expected time of when the community will hear an update from Novartis next.

02/04/2026

EUpALS is partner in EU project Real4Reg , in which ALS is a use case.

The project aims to promote the use of real-world data (RWD, e.g. national healthcare registers and claims data) and new technologies (e.g. artificial intelligence or machine learning) to support regulatory and health technology assessment (HTA) decisions about medicines.

Join our online Patients Workshop on 13 April 2026 (15:00-16u30 CET) entitled “Real-World Data and Patients: Breaking the Ice” by registering for free at https://forms.gle/jSdj18c7kgfd41Gt7

30/03/2026

EUpALS Industry Partners Ferrer and Prilenia jointly announce the first enrollment in the PREVAiLS Phase 3 study of pridopidine in people with rapidly progressive ALS early in their disease course.

The first participant was enrolled at the Mass General Brigham (US). Recruitment at additional sites in the US, Canada, EU, UK and Israel is expected to commence in the coming weeks and months

Read the attached Community Update.

Evy Reviers, Chairwoman of EUpALS comments: “We welcome that Ferrer and Prilenia joined forces to initiate the PREVAiLS Phase 3 Study as it represents continued progress in rigorous clinical research in ALS. We greatly appreciate the commitment of both companies to involve people with ALS at different steps in the process and look forward to following the PREVAiLS study as it progresses.”

24/03/2026

The EUpALS Newsletter Spring 2026 edition is out.

Read this and previous issues at https://als.eu/news/
Don't miss future ones by signing up via https://als.eu/

23/03/2026

EUpALS brings to your attention the questionnaire for people with ALS and their carers, developed by the European Reference Network for NeuroMusculat Diseases (ERN-NMD).

All information and link to the survey in multiple European languages can be found at https://ec.europa.eu/eusurvey/runner/ALSpatients

Please distribute within your national network of pALS and cALS.

17/03/2026

EUpALS Industry Partner NeuroSense Therapeutics announces that results from the PARADIGM Phase 2b clinical trial of PrimeC in ALS have been published in the prestigious journal JAMA Neurology.

The article presents an integrated analysis of PrimeC’s safety profile, clinical outcomes, and biomarker findings over 18 months in people with ALS.

The publication highlights consistent findings across multiple domains, including:

• Slower functional decline
• Reduced risk of ALS-related complications
• Modulation of disease-relevant biomarkers, including iron-regulatory and microRNA pathways

Together, these findings strengthen the scientific rationale for PrimeC’s potential as a disease-modifying therapy.

NeuroSense is grateful to the patients, investigators, and collaborators who made this work possible, and honored to partner with leading ALS research centers and their distinguished clinical teams in advancing research for people with ALS.

Read the full publication at https://jamanetwork.com/journals/jamaneurology/fullarticle/2846474?guestAccessKey=e315da8b-f9a9-472c-8514-0abcf22051bb&utm_source=for_the_media&utm_medium=referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=03162626

16/03/2026

From February 11 to 13, EUpALS attended the TRICALS Masterclass 2026.

It brougt together researchers from top ALS centres, industry representatives, patient (advocates), and regulators united by one shared objective: to improve and accelerate the development of treatments for ALS.

Read the event recap and watch the aftermovie at
https://www.tricals.org/news/tricals-masterclass-2026-europe-joins-forces

Tricals - The highway towards a cure

28/02/2026

Today is Global Rare Disease Day!

Despite / is classified as a rare/orphan disease, no less than 50.000 European people are living with ALS.

Support the Rare Disease Day campaign by sharing this message.