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