International Alliance of ALS/MND Associations

Fundamental Rights of People with ALS/MND and Caregivers

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

Although the Alliance and our representatives understand that some of these conditions may not be immediately attainable in all countries, these documents represent the sets of rights all Alliance member organizations should adopt and promote as conditions, systems and resources allow.

Fundamental Rights Documents

The International Alliance of ALS/MND Associations supports the following fundamental rights for people living with ALS/MND and caregivers of people living with ALS/MND:

These Fundamental Rights were last revised in January 2024, based on the results of the 2023 Fundamental Rights Survey.

Fundamental Rights 2023 Results Webinar

In 2023, the International Alliance of ALS/MND Associations surveyed the community about the Fundamental Rights of People living with ALS/MND and Caregivers. Learn more about the data, strengths and weaknesses at a global level, the questions raised, the topics that require further attention, and how these compared to our 2021 survey.

 

Poster Presentations

Click below for the poster presentation on the overview of the results of the 2023 Alliance’s survey on the Fundamental Rights of People living with ALS/MND and Caregivers.

You can also click below to view the 2022 poster presentations on the results of the Alliance’s 2021 Fundamental Rights survey.

Convention on the Rights of Persons with Disabilities and Optional Protocol

The PALS and CALS Advisory Council and the Alliance support the “Convention on the Rights of Persons with Disabilities and Optional Protocol” as brought forward by the United Nations. The Convention supports the global promotion and protection of all human rights and fundamental freedoms for all people with disabilities, including those living with ALS/MND. Of note, the Alliance emphasizes the importance of Articles 9 and 19 surrounding a person’s independence and their rights to equal accessibility and participation in daily living and enjoyment of life.

By providing equal access to all aspects of daily living and services, people living with ALS/MND are able to live autonomously and independently. This means that people living with ALS/MND are able to make their own choices or decisions about their daily living, living arrangements, healthcare provision, and community involvement. Global provision of equal access to services such as transportation, housing, workplace environment, medical facilities, and information services can support both enjoyment and quality of life and support for a person’s independence.

In addition to supporting the Convention, these rights as they pertain to people living with ALS/MND are extrapolated into the Fundamental Rights of People Living with ALS/MND.