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On today's International Volunteer Day, #EUpALS thanks the numerous informal caregivers (cALS) who daily assist their loved pALS. cALS are a true cornerstone in care for pALS, greatly contributing to the quality of life of people with #ALS/#MND!

On International Universal Health Coverage Day, #EUpALS thanks all health care professionals that collaborate in multidisciplinary teams to provide people with #ALS/#MND the medical follow-up they deserve. #TogetherWeAreStrong

EUpALS Industry Partner Corcept Therapeutics announces results of DAZALS Phase 2 trial of Dazucorilant in ALS. DAZALS failed to meet its primary endpoint, change from baseline in ALS-FRS-R in dazucorilant compared to placebo. Open label extension study continues. Survival assessed March 2025

It is with great sadness that #EUpALS informs you on behalf of our chairwoman Evy Reviers the passing away of her father Danny. Danny was the great inspirer of ALS Liga Belgium, and for long time a member of the EUpALS Patients and Carers Expert Board.

The EUpALS Newsletter Winter 2024 edition is released today. Read this issue at mailchi.mp/f49e59eb.../eu… Don't miss future ones by signing up via als.eu/subscribe

#EUpALS wishes its member associations, patients and carers expert board, scientific expert board, industry partners, regulatory bodies and all people with #ALS/#MND warm and loving holidays!

EUpALS Industry Partner Denali Therapeutics announces topline results of eIF2B Agonist DNL343 trial conducted in the HEALEY ALS Platform. Primary endpoint and key secondary endpoints were not met. DNL343 was found to be safe and well-tolerated. Additional analyses expected later in 2025.

Companies AbbVie and Calico announced topline results of eIF2B activator Fosigotifator trial conducted in the HEALEY ALS Platform. Fosigotifator was found safe and well-tolerated. Findings at exploratory high dose suggest that target and approach need additional investigation.

EUpALS Industry Partner uniQure announces favorable recommendation from Independent Data Monitoring Committee for its Phase I/II EPISOD1 Clinical Trial of AMT-162 for the Treatment of SOD1-ALS. Read the press release attached, as well as the information brochure on AMT-162.

EUpALS is partner in EU Horizon project HEREDITARY. Last week we attended the Annual Plenary Meeting in Barcelona (Spain). Infrastructure for federated multimodal data sharing is getting into place, to analyze the data for the #ALS/#MND use case. #EUpALS #TogetherWeAreStrong

EUpALS is participating in the #TRICALS Masterclass 2025 in Amsterdam (The Netherlands). Today our Chairwoman Evy Reviers represented the patient perspective in the panel discussing what evidence is needed from a Phase 3 ALS trial. #EUpALS #TogetherWeAreStrong

Today is Global Rare Disease Day with the slogan 'Rare but many'! #ALS/#MND is indeed classified as a rare/orphan disease, but in Europe people with ALS/MND represent about 50.000 individuals. ##RareDiseaseDay #ShareYourColours #EUpALS #TogetherWeAreStrong

Today, #EUpALS Chairwoman Evy Reviers was keynote speaker at the RNA Leaders Europe Congress in Basel (Switserland). She presented a talk on '#ALS: The Patient, The Scientist, The Disease to Conquer' including an overview of clinical development of ASO therapies for ALS.

EUpALS recently welcomed Prof. Ammar Al-Chalabi (Kings College London, UK) to our offices in Leuven (Belgium). Thank you, Ammar, for your interest in our daily operations and your commitment in the EUpALS Scientific Expert Board. #EUpALS #TogetherWeAreStrong

The EUpALS Newsletter Spring 2025 edition is released today. Read this and previous issues at als.eu/node/157 Don't miss future ones by signing up via als.eu/subscribe

#EUpALS academic partner #TRICALS announced termination of the Lighthouse II study after interim analysis. Results to date showed no benefit of Triumeq for people with ALS when compared with placebo on survival, the primary outcome measure. Read the full press release attached.

The long awaited results of the EU Horizon funded MIROCALS clinical study with low-dose IL-2 in ALS are published in The Lancet. The open access full paper can be read thelancet.com/journals/lance… #EUpALS #Togetherwearestrong #ALS #MND

ALS Liga Belgium informs that - celebrating their organization's 30th anniversary this year – they today have launched their new website: ALS.be Timing of the milestone – Friday May 23 at 10AM CET - marks the birthday of their founder and inspirer Danny Reviers.

Satellite to #ENCALS 2025 in Turin, EUpALS organized its Round Table 'Patient Reported Outcomes in ALS clinical trials'. Thanks Dr. Syed Raza (argenx), Prof. Christian Lunetta (Milan) and Ywan and Stéphane for having set the stage from industry, academic and patient perspective.

Satellite to #ENCALS 2025 Turin, EUpALS organized its Annual General Meeting. We informed about our activities, governance, and partnership in EU projects #real4reg and #hereditary. We learned a lot of inspiring initiatives taken by many Member Associations and Industry Partners.