Resources

The International Alliance has created a number of resources to assist members and others interested in ALS/MND.

The Resources Library

The Resources Library Site has been created to:

  • enable members to have access to materials already developed for those affected by ALS/MND so they can use them in their own country.
  • help member organisations build on existing strengths if adapted resources from other members will serve their purpose.
  • provide all those interested in ALS/MND with access to literature endorsed by a member organisation of the Alliance.

Click here to access the Resources Library Site.

Policy Documents

The International Alliance has created policy and position documents to clearly state its own policies and positions and to assist members in the development of their own policy on key issues affecting people living with ALS/MND.

To access these policy and position documents, click on the name of the document.

Statement of Good Practice in Drug Trials – a statement reflecting the key wishes of people living with ALS/MND and their representative organisations regarding the conduct of drug trials

Statement of Good Practice for the Management of ALS/MND – establishes the basic services and performance standards for people before, at and following diagnosis with ALS/MND

Guidelines for Predictive Testing – provides guidelines on the conduct of predictive testing for familial forms of ALS/MND

Advanced Directives – provides an overview of a persons right to make decisions about what will happen to them and their treatment, the concept of Advanced Directives, the various wording that is used

Alternative Treatments – provides key questions and areas of inquiry to assist people living with ALS/MND to inform themselves about possible courses of action they may consider. ‘Alternative’ refers to treatments or interventions that are not part of mainstream (conventional or Western) medicine and generally have not been scientifically documented and/or may not be recognised as being safe and effective for ALS/MND

Patients Rights - provides an overview of the fundamental rights of of people living with ALS/MND

The International Alliance and its role in ALS/MND Research - a statement explaining the Alliance's position in Research

Statement of Palliative Care in ALS/MND - the intent of the statement is to increase understanding that palliative care  occurs throughout the continuum of care