Fundamental Rights of People with ALS/MND

Aims and Focus of the 2016 Global Day Campaign

Every day, members of the Alliance work together to improve the quality of life and care available to people with ALS/MND worldwide. We recognise that people with ALS/MND all over the world have fundamental rights, including the right to access the best care available.

Over the last year, members of the Alliance and our Board of Directors have worked hard to update a special advocacy document naming and supporting The Fundamental Rights of People with ALS/MND Worldwide. This is one of the Alliance’s core position statements.

This rights document was updated, revised and finalized in April 2016. Although some of the conditions we list might not be immediately attainable, they represent the set of rights all associations, governments and healthcare systems should promote and aspire to. These rights are aspirational for people with ALS/MND across the globe.

As a first step, we have invited all of our member associations – representing more than 35 countries worldwide – to offer official endorsement of our fundamental rights document. As each association offers this endorsement, we add their logo to the document as a visual representation of support from around the world. As of early June 2016, we’ve already added more than 15 member logos!

Our goal is to have as many supporters as possible by Global Day 2016. The more associations that declare their support for the rights of people with ALS/MND, the stronger this document becomes as a tool for advocacy on the local, regional and global levels. This document also supports our members’ existing campaigns related to the rights of people with ALS/MND.

Show your support: read, share and endorse the fundamental rights of people with ALS/MND!


  1. To engage members and create solidarity in the ALS/MND community through a coordinated Global Day campaign.
  2. To promote the rights of people living with ALS/MND worldwide and to encourage member associations to advocate for these rights.
  3. To create and share key messages that raise ALS/MND awareness worldwide.

How Members Can Get Involved

It’s easy for member associations to get involved! Read the document here. Then bring the document to your Board of Directors for official approval. Once you are ready to lend your association’s endorsement, email our General Manager with your logo, and she will add it to the page.

Individuals and non-members can also participate by simply sharing this document via social media and advocating on behalf of people with ALS/MND.

On and around 21 June, we will promote this document and the associations that have lent their support. Share our posts and Tweets! We will use our advocacy hashtag #ALSMNDWithoutBorders; we are proud that members from all parts of the world can endorse this document across borders.

We also encourage all members to promote the fundamental rights of people with ALS/MND via their own social media messages on 21 June. Don’t forget to tag @alsmndalliance on Twitter!

Key Message

United in advocating for people with ALS/MND worldwide