About ALS Centre Netherlands

Our history

ALS Centre Netherlands was established in 2003, with the aim of bringing together care, diagnostics, and scientific research into ALS (amyotrophic lateral sclerosis), PMA (progressive muscular atrophy), and PLS (primary lateral sclerosis) under one roof. Since its founding, the Centre has been coordinated by Professor Leonard van den Berg from UMC Utrecht. 

The Centre has since grown into the Dutch national expertise centre for these diseases. Today, ALS Centre Netherlands sees more than 85% of all Dutch residents diagnosed with ALS, PMA, and PLS in the Netherlands, and works closely with ALS/MND centres around the world to accelerate the search for effective treatments. 

Our core activities

ALS Centre Netherlands, based at UMC Utrecht, exists to improve diagnosis, care, and treatment for people with ALS, PMA, and PLS in the Netherlands. 

The ALS Centre Netherlands is defined by a unique combination of care and diagnosis, education, and scientific research, allowing knowledge and expertise to come together seamlessly. Neurologists, rehabilitation physicians, and researchers work hand in hand with a team of allied health professionals.

Care and diagnose

When a Dutch neurologist suspects ALS, they will often refer the patient to ALS Centre Netherlands, which also offers second opinions. No single test can confirm or rule out ALS, so an accurate diagnosis relies on deep experience andspecialist expertise. 

ALS Centre Netherlands sees more than 85% of people with ALS, PMA, and PLS in the Netherlands. Patients can almost always be seen at our outpatient clinic within a short time frame after referrel, for a dedicated diagnosis day with ALS specialists. We aim to confirm a diagnosis within a single day, to give people clarity as quickly as possible. 

After an ALS diagnosis, patients are referred to one of the specialised ALS treatment teams, together forming the ALS Care Network This rehabilitation team supports them in remaining as independent as possible for as long as possible, advising on assistive devices, nutrition, exercise, speech and swallowing difficulties, and breathing problems.

Within the ALS Care Network, ALS Centre Netherlands works together with ALS treatment teams and home care providers  to provide the best possible care and support for people with ALS, PMA, and PLS, and for their carers. 

Scientific research

ALS Centre Netherlands conducts a wide range of scientific research, from drug trials to studies on improving care and support for people with ALS, PLS, or PMA. A significant part of our work is also dedicated to understanding the underlying causes and disease progression of ALS.

Education and knowledge sharing

ALS Centre Netherlands plays an essential role in education and in making knowledge about ALS, PLS, and PMA accessible. ALS Centre Netherlands provides clear information through their website, social media and other news outlets. In addition, the Centre regularly communicates the latest scientific findings and provides expert interpretations and perspectives on major external (international) developments. 

ALS Centre Netherlands within the Dutch ALS Care Network

Within the ALS Care Network, ALS Centre Netherlands plays a central coordinating and educational role. The network connects ALS treatment teams and home care teams across the country to provide the best possible care and support forpeople with ALS, PMA, and PLS, as well as their carers. 

To ensure high, consistent care quality nationwide, ALS Centre Netherlands provides advice, ongoing support, training and workshops, and symposia for healthcare professionals. This ensures the entire national network operates according to the latest research and insights. 

Strength through collaboration

Finding a treatment for ALS, PMA, and PLS is like solving a puzzle. Every piece of knowledge, every discovery, and every donation is a piece of that puzzle , bringing us one step closer to understanding the cause, improving treatment, and delivering better care. Solving this puzzle takes collaboration. That is why the ALS Centre Netherlands have joined forces with the Dutch ALS Patients’ Association and the ALS Foundation Netherlands within the project GoALS. 

The Dutch ALS Patients’ Association, ALS Centre Netherlands, and the ALS Foundation Netherlands are independent organisations, each with its own goals. Drawing on their own perspective and expertise, all three are committed to the fightagainst ALS, united by one shared goal: a world without ALS, PMA, and PLS. Working together brings us closer, faster, to a solution for the disease, and helps improve care and quality of life for people living with ALS, PMA, and PLS.

International collaboration

ALS Centre Netherlands not only collaborates on a national level, but is also a globally recognized research institution. Its reputation is built on pioneering large-scale international collaborations and initiatives, playing a pivotal role in advancing ALS research and clinical trials worldwide.

• Project MinE: The ALS Centre Netherlands co-founded Project MinE, the world’s largest international database for genetic research into ALS. By analyzing DNA profiles from ALS patients across multiple continents, this initiative works to identify the underlying genetic risk factors of the disease. 
• TRICALS: Initiated by and led out of UMC Utrecht, TRICALS (Treatment Research Initiative to Cure ALS) is Europe’s largest clinical trial network for ALS. It connects over 60 specialist ALS centres across 16+ countries to coordinate, accelerate, and standardize clinical trials for potential new potential medicines.  
• ENCALS: ALS Centre Netherlands works closely within the European Network for the Cure of ALS (ENCALS), contributing directly to shared European research strategies and clinical guidelines. 
• PLUS ALS: an international collaboration between the ALS Centrum Netherlands (UMC Utrecht) en ALS Centre Leuven (UZ/KU Leuven) to accelerate ALS clinical research by using an international biomarker platform