ALS Patients Connected


Although the fight against ALS remains unresolved to this day, this may change tomorrow. While searching for a medicine against this dreadful disease, a lot of good work is getting done. ALS disease is now being introduced to a wider public and we’re getting closer to a solution. Unfortunately, it doesn’t necessarily lead to a more prominent patient voice in the debate yet.


The aims of patient organization ALS Patients Connected are to find a solution for ALS and to improve the quality of life that reflects the patient’s needs as much as possible. We do this by uniting, connecting and representing patients with ALS, PLS and PSMA disease. It enables entities, who are dedicated to ALS disease, to use the experiences and knowledge of those affected by these diseases. We hope to achieve more support and understanding for the patient’s needs and to optimize and accelerate research. We can only do this if more patients become a member of our patient organization. Join us free of charge and help ALS Patients Connected to make a contribution to find a solution for ALS.

Donations are welcome. ALS Patients Connected has obtained the ANBI status.

We don’t charge a membership fee as we mainly depend on donations and grants. Although, we prefer to work with volunteers as much as possible, in some cases we have no choice but to hire specialist knowledge or purchase certain items. Monetary donations are always appreciated but we need volunteers just the same. Members are allowed access to the annual figures and budget as well as an overview of income and expenses. If you would like to make a donation directly to our bank account, please use the banking details below.

Account number: NL 61 INGB 0006719082, attn. Vereniging ALS Patients Connected

ALS Patients Connected was established by patients. We want to inform and support individuals and families affected by ALS disease and to accelerate research on a medicine against ALS.

We choose not to charge a membership fee to our members. Instead we prefer to work with volunteers as much as possible. Do you want to be a volunteer in our organization? Awesome! Please click on the link and fill in the form. All help is welcome.

Our organization works together with volunteers wherever possible. There is plenty of volunteer work to do in different areas. For example, think of updating social media or serving drinks during the annual meeting of members. We will need the engagement of volunteers more than ever. Being an all-volunteer board, our Board cordially invites you to get in touch if you are able or want to participate in volunteering with us. Thank you for your commitment to help us.

Become a member now!

Make a contribution to a solution against ALS

Our blog

What we do

  • Support each other
  • Provide each other with advice
  • Involvement with researchers
  • Interlocutor of subsidy providers
  • Co-decision with research

why become a member ?

• Helping fellow patients
• Contribute to a faster solution against ALS
• Show your opinion to subsidy providers
• Influence on research
• Transfer experience to agencies

Help ALS out of the world.

More information

How to find us