Need for patient advocacy
“Patients need to be able to co-decide with their doctors about their treatment and quality of life”, said the Director of the Thalassaemia International Federation (TIF), who visited Thessaloniki on occasion of the Congress of the Greek Thalassaemia Association. For this purpose, a special workshop titled “Train the Trainers” was held to educate patient leaders.
“Not only treatment but also their quality of life should be taken into account and, to achieve this, the patients must have equal participation in decision-making centres. They need to be constructive and equal partners. And to be able to do this effectively, they need to go through a series of steps: Patients need to be trained, to know how to advocate and how to claim” said the Executive Director of TIF.
TIF represents 207 patient associations from 68 countries in the world.Watch the video