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:
Last revised April 2021
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.