Fundamental Rights for People with ALS/MND and Caregivers

The Fundamental Rights represent the ideal standard for people living with ALS/MND and their caregivers worldwide. These rights guide the Alliance’s work and serve as a shared framework that all member organizations can adopt and promote as conditions, systems, and resources allow. We recognize that some of these rights may not be immediately attainable in all countries. Even so, they reflect what every person living with ALS/MND and every caregiver deserves.

Fundamental Rights for People Living with ALS/MND

Upon diagnosis — or likely diagnosis — people living with ALS/MND have the right to:

1. Access the highest-quality treatments available.
2. Access approved drugs.
3. Access clinical trials.
4. Receive the highest standard of care.
5. Receive accurate information, tailored resources, ongoing education, and training that promote health literacy and informed decision-making about ALS/MND.
6. Make informed choices with respect to:
   • health and support professionals;
   • the setting in which care is received; and
   • the types of treatment or support they receive.
7. Make end-of-life choices, including the right to accept, decline, or stop treatment within the legal framework of their own country.
8. Contribute to the design, delivery, and evaluation of healthcare and support systems, including policy, care practices, and research.
9. The freedom to have the highest possible quality of life, according to their own values and preferences.
10. Live free from any form of discrimination.
11. Confidentiality and privacy regarding their personal information, and the ability to provide consent for others to communicate on their behalf.
12. Receive any available governmental or other financial support, benefits, and entitlements.
13. Have access to:
    • up-to-date education about clinical genetics in ALS/MND;
    • genetic counselling;
    • genetic testing; and
    • safeguards against genetic discrimination.

Note on genetic rights: Where appropriate, and with education and counselling, blood relatives of people living with ALS/MND should also be offered access to genetic counselling and testing. 

Revised October 2025. Download the PALS Fundamental Rights document (PDF).

Fundamental Rights for Caregivers of People Living with ALS/MND

These rights apply to non-professional caregivers (family members, friends, and others who provide care and support to people living with ALS/MND). Caregivers have the right to:

1. Be treated with dignity and respect, and be recognized as knowledgeable and experienced in the care of their person with ALS/MND.
2. Receive comprehensive support and services for their own well-being, including:
   • counselling;
   • emotional support programs;
   • mental health services;
   • social programs;
   • respite care programs; and
   • the ability to seek help as and when they need it.
3. Receive palliative care advice and services.
4. Receive bereavement advice and services.
5. Receive any available financial support, benefits, or entitlements — whether governmental or private — to assist in providing care to their person with ALS/MND.
6. Access all tools, services, and systems that support their caregiving role, including:
   • education, training, and resources that promote ALS/MND health literacy;
   • the ability to remain with their person with ALS/MND during hospital or clinic admissions;
   • timely access to medical appointments and treatments;
   • the ability to request professional support in daily care and living arrangements; and
   • the ability to communicate directly with the healthcare team, with prior consent from their person with ALS/MND.
7. Contribute meaningfully to the development, implementation, and evaluation of healthcare and support systems — including policymaking, care practices, and medical research — that affect both themselves and their person with ALS/MND.

Revised October 2025. Download the CALS Fundamental Rights document (PDF).

Survey and Research

The Alliance conducts periodic surveys to assess how these rights are being met worldwide. The 2025 survey is now closed. Findings will be shared late 2026. Read the 2023 Fundamental Rights Survey Report for a detailed assessment of how these rights are being met globally, including data, strengths, and gaps identified across the ALS/MND community. 

• An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide – 2023 (PDF)
• An Assessment of Fundamental Rights for Caregivers of People Living with ALS/MND Worldwide – 2023 (PDF)
• An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Quality of Life (PDF)
• An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Multidisciplinary Care (PDF) 
• An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Voice Preservation (PDF)
• An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Genetics (PDF)
• Emergency Preparedness Toolkit for People Living with ALS/MND (PDF)

United Nations Convention on the Rights of Persons with Disabilities

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 particular emphasis on Articles 9 and 19, which guarantee independence, accessibility, and participation in daily life. Equal access to services — including 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.