International Alliance of ALS/MND Associations

Fundamental Rights for People with ALS/MND and Caregivers

The Fundamental Rights represent the ideal for people living with ALS/MND and their caregivers worldwide. These rights guide everything we do at the Alliance.

We recognize that some of these rights may not be immediately attainable in all countries. Even so, they serve as a shared framework that all Alliance member organizations can adopt and promote as conditions, systems, and resources allow.

Participate in the 2025 Survey

The 2025 Fundamental Rights Survey is now open, and we invite you to share your experience as a person living with ALS/MND, a caregiver, or a blood relative. Your input provides valuable insights into where fundamental rights are being met, where gaps remain, and how advocacy can drive change. By participating, you contribute to global efforts to improve quality of life and identify opportunities for broader collaboration.

The survey is available in 15 languages, and it takes about 15 minutes to complete. This year includes a new section for blood relatives to help us understand the availability and use of genetics services.

Take the 2025 Survey now.

Our goal this year is 3,000 responses from around the world. Please take the survey, and then share it widely with your networks to help us reach this target, so we can gather the data needed to drive change.

Fundamental Rights Documents

The International Alliance of ALS/MND Associations supports the following fundamental rights:

Read the 2023 Survey Report for a detailed assessment of how these rights are being met worldwide. 

Fundamental Rights 2023 Results 

In 2023, the Alliance surveyed the ALS/MND community about these rights. Watch the webinar to explore global data, strengths, and gaps; topics needing further attention; and comparisons with our 2021 survey.

Poster Presentations

Explore poster presentations based on the 2023 Fundamental Rights survey results:

Convention on the Rights of Persons with Disabilities and Optional Protocol

The Alliance and the PALS/CALS Advisory Council support the United Nations Convention on the Rights of Persons with Disabilities and Optional Protocol. This Convention promotes and protects the human rights and fundamental freedoms of all people with disabilities, including those living with ALS/MND.

We place special emphasis on Articles 9 and 19, which guarantee independence, accessibility, and participation in daily life. Equal access to services—such as transportation, housing, healthcare, workplace environments, and information—enables people with ALS/MND to live autonomously and make their own decisions.

These principles are embedded within the Fundamental Rights of People Living with ALS/MND.