EUpALS

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European organisation for professionals and patients with ALS.

15/10/2026

EUpALS partners in the European Hereditary Project, they have launched a new citizen science questionnaire to explore how people understand health-related information and to identify ways to make medical terms clearer and easier to understand.

Want to know more about the survey? https://hereditary-project.eu/do-medical-terms-make-sense-to-you-help-hereditary-find-out/

The questionnaire takes around 10–15 minutes and requires no previous medical knowledge. Take the questionnaire: https://research.sc/participant/login/dynamic/0F7C8089-B157-4213-BEB9-4E2A04A885EE

More information on the Hereditary Project: https://hereditary-project.eu/citizen-science-public-engagement/

13/10/2026

Today we had the pleasure to welcome Robert-Jan van Son from Orphan Now, representing Ferrer Belgium, in the offices of EUpALS and ALS Liga - Ligue SLA. We enjoyed the informative catch-up and look forward to continue our battle against ALS together!

01/10/2026

EUpALS is attending the iMND Meeting 2026 in Rotterdam. At this international scientific gathering investigators share their knowledge about how organoids (laboratory mini-organ cultures) contribute to further understanding the ALS disease mechanism. Based on these findings, potential therapies can be developed.

29/09/2026

VectorY Therapeutics expands the trial size of the PIONEER-ALS Phase 1/2 clinical trial from 12 to 36 participants. This broadens the evaluation of VTx-002 and will help in the understanding of how it may address the underlying pathology of ALS.

Read more below!

29/09/2026

Otsuka America Pharmaceutical, Inc. announced the initiation of a global early acces program for Ulefnersen. For eligible people living with FUS-ALS who meet program criteria, the EAP offers a potential pathway to access the investigational medicine.

Read more in the attached press release.

23/09/2026

BREAKING NEWS:

EUpALS Industry Partners Ionis Pharmaceuticals and Otsuka America Pharmaceutical, Inc. announce positive topline results from the Phase 3 FUSION trial with ulefnersen in FUS-ALS.

Read the attached press release.

Another example that ALS is a treatable disease !!!

21/09/2026

The EUpALS Newsletter Autumn 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

17/09/2026

Outstanding initiative from the ALS FIND A CURE NOW - Hellenic ALS Association in collaboration with the ALS Network in the United States.

From 5-12 October Tom Horton will be undertaking a remarkable paddleboarding expedition together with 9 family members and friends through the Greek Islands as part of the Greek Islands Paddle to Cure ALS. This in honor of his mother Anastasia Kaliopi Daoutis Horton, who passed away in 2005 due to ALS.

The EUpALS team wishes them the best of luck with this impressive event!

More info on Tom Horton’s story and the fundraiser can be found here: https://secure.alsnetwork.org/site/TR/DIY/General?pg=team&fr_id=1250&team_id=7491

25/08/2026

BREAKING

EUpALS Industry Partner Novartis shares a community update on the discontinuation of the ASTRALS Phase 2 trial with VHB937 in people with / .

Please, read the attached communication.

23/06/2026

Satellite to 2026 in Madrid, EUpALS organized its Annual General Meeting.

We informed our stakeholders about EUpALS activities, governance, and EUpALS partnership in EU Horizon projects and Hereditary Project .

But even as important, we learned a lot of the inspiring initiatives taken by the many EUpALS Member Associations and Industry PBut even as important, we learned a lot of the inspiring initiatives taken by the many EUpALS Member Associations and Industry P .

Thank you all for your attendance in person or on-line!

Adresse

Vaartkom 17
Leuven
3000

Site Web

http://www.ALS.eu/

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