May is #ALS Awareness Month. On this occasion, EUpALS and Industry Partner Worldwide Clinical Trials highlight the role that the patient and caregiver experience needs to play in clinical development of ALS therapies. Read our blog at worldwide.com/blog/2024/05/p…

On this Mother's Day, EUpALS wishes all mothers living with #ALS/#MND, or being a carer for a person living with this disease, a happy time surrounded by your loved ones. #EUpALS #togetherwearestrong

Biogen and Ionis Announce Topline Phase 1/2 Study Results of Investigational Drug in ALS. Unfortunately, the companies announced decision to terminate development of BIIB105 (ION541) ASO targeting ataxin-2 (ATXN2) for ALS. Read the press release at als.eu/als-research-n…

European Commission adopted positive opinion EMA CHMP on Biogen QALSODY for treatment of #SOD1-#ALS. This allows the company to start market access negotiations in individual EU member states. Read Biogen Community Statement attached and press release on ALS.eu

Countdown to #ENCALS2024 where EUpALS organises its Round Table on Sunday evening and Annual General Meeting on Monday morning. We are eagerly looking forward to soon meet you in person in Stockholm or via the weblink provided. #EUpALS #TogetherWeAreStrong

Thank you all Industry Partners, member associations, members of the Scientific Expert Committee and Patients and Carers Expert Board for the lively interactions at the EUpALS Round Table on Data Sharing, satellite to #encals2024.

This morning EUpALS organised satellite to #encals2024 its Annual General Meeting in Stockholm, highlighting our activities 2023, including our partnerships in EU Horizon projects Real4Reg and HEREDITARY. Thank you the 50 in person attendees and those who joined online.

At #ENCALS2024 the #EUALSCoalition was presented by co-chairs Evy Reviers (EUpALS) and Prof. Julian Grosskreutz (Univ. Lübeck). Ideal opportunity to make the broad ALS community aware of this valuable initiative to bring improved diagnosis, care and treatment to European PLWALS.

EUpALS collaborated with the European Academy of Neurology (EAN) to publish the new Guideline on Management of #ALS. At #ENCALS2024 this important document was presented by Prof. Philip Van Damme (KU Leuven, Belgium) as chair of the EAN ALS Guideline working group.

Today is Global ALS Awareness Day! Watch the EUpALS 10 years Ice Bucket Challenge rememberance video, honoring its founders late PLWALS #AntonySenerchia, #PeteFrates #PatQuinn. Do IBC again, nominate friend and donate als.eu/node/60 #ALSIceBucketChallenge2024 #MoveALS

EUpALS is partner in EU Horizon project Real4Reg. Read the patient-focused Newsletter of June 2024 at real4reg.eu/newsletter/rea… spotlighting the EUpALS activities. Subscribe for future Real4Reg Newsletters via real4reg.eu/news-events/ne…

EUpALS is attending the consortium meeting of EU Horizon project Real4Reg in Helsinki to catch up with all partners. We are discussing the progress and future activities of this exciting project on the use of Real World Data for regulatory decission making.

EUpALS Member highlight! ALS Liga - Ligue SLA collaborates with innovative company MindSpeaker to clone PLWALS voice for future integration in wide range of communication devices. Below images from pop-up recording studio on Global ALS Awareness Day at the ALS Liga Belgium offices.

To keep track of the latest developments in ALS research, EUpALS attended ENCALS 2024, held June 17-20 in Stockholm (Sweden). Read the concise report with highlights and take home messages at our website ALS.eu

EUpALS warmly welcomes Giampaolo Merlini -nominated by Associazione conSLAncio Onlus - as new member of the Patients and Carers Expert Board (PCEB)! als.eu/expert_board 2 candidates of each EUpALS Member Association are eligible. Submit concise application by e-mail to [email protected]

Governance news: To better connect with the international consensus today on how to address those affected by #ALS, EUpALS changed its full name to 'European Organisation for Professionals and People with ALS' via publication in the Belgian Official Gazette. #TogetherWeAreStrong

Online magazine Pink Sheet published an extensive article on how the FDA and EMA applied regulatory flexibility in decision making on Amylyx Relyvrio/Albrioza, to which EUpALS contributed. A must read at pink.citeline.com/PS154925/Decod… with possiblity of a 7 days free reading trial.

Today is International Day of Charity! EUpALS aims for equal access to ALS clinical research for all European people with ALS. We cannot do this without your help. Your donation at ALS.eu - DONATE makes the difference. EUpALS and all European pALS thank you!

Artificial Intelligence (AI) can potentially enhance speed and use of Augmentative and Alternative Communication (AAC). Boston Children's Hospital (USA) likes to know your opinion on AI in AAC. Particularly people with ALS are encouraged to take the survey tinyurl.com/ALSAugComAI

EUpALS is partner in EU project Real4Reg, assessing potential of AI analysed Real-World Data for regulatory decision making. October 14, 11:30-13h00 CET, we organise the online workshop 'Demystifying Real-World Data - Insights for patients'. Register at docs.google.com/forms/d/1WcWih…