Patients’ Rights Charter

Since it was founded in 1992, the International Alliance of ALS/MND Associations has been instrumental in helping associations from around the world to advocate and develop services for people living with ALS/MND.

In 1999, the Alliance developed an initiative called the “Baseline of Services for People Living with ALS/MND.” The “baseline” briefly enumerated the rights of people who live with ALS and related motor neurone diseases.

Today, in 2013, we are collaborating with the MND Association of England, Wales and Northern Ireland to adopt a more comprehensive list of rights that extends to people living with ALS/MND and their carers.

Click here to view the charter we have created!

The Alliance’s goal is to encourage ALS/MND associations from all over the world to modify and adopt this charter, and by doing so, defend the human rights of people living with ALS/MND and their loved ones.

When associations adapt this charter and publicly support it, they join the Family of ALS/MND Charters.

So far, this charter has been adapted and translated into Turkish, Italian, Spanish, and more, and it is now reaching people with ALS/MND and their carers around the globe.

Below, we are excited to list the member organisations who have chosen to translate, adapt, and adopt the charter in advance of 21 June, 2013: Global ALS/MND Day.  Thank you to all who have participated!

You can view the MND Association’s charter and their own national campaign here.


ACELA, Colombia

ALS-MNH Dernegi, Turkey

AISLA, Italy

ELA Peru, Peru

FUNDELA, Spain

FYADENMAC, Mexico

The Les Turner ALS Foundation, USA

The Miquel Valls Foundation, Spain

MND Australia, Australia

The MND Association of Iceland, Iceland

The MNDA of England, Wales and Northern Ireland, United Kingdom


If your association would also like to adopt the charter and be included in this list, please email the General Manager, Rachel Patterson, at alliance@als-mnd.org.