What we do

Programs and projects

Objectives and priorities of the Amyloidosis Alliance

  • Awareness - Diagnosis
  • Treatment and Care
  • Research
  • Communication and mutual support between patient organizations
  • Advocacy at International level
  • Support other countries in initiating patients group and organizations

In 2018, task forces have started their work on following topics:

  • Organisation of an ATTR International 'Doctors and Patients Congress' every two years. The next congress will be in Berlin September 2-3, 2019
  • Website, the first step is achieved: this website is online as you can see! This task force will go on to complete and improve this first version
  • Mapping which medication is available/not-available and accessible in which countries? A survey is in progress and targeted to release in the summer of 2019.¬† With the results, we will include a world map on this website on access to ATTR medication.
  • Awareness and Diagnosis, a survey is in progress to know more about diagnosis protocols in the different countries

In 2019, new task forces will start to work on:

  • Standards for Cure and Care
  • Research and Trials
  • Advocacy (planned)
  • AL Amyloidosis¬†