Gene therapy for thalassaemia is an expensive and complex procedure, with great efforts ongoing currently by all involved stakeholders, such as patients, healthcare professionals, etc. to ensure its accessibility and availability to as many patients across the world as possible.
Acknowledging that the approval of gene therapy for thalassaemia is now a reality, the Thalassaemia International Federation (TIF) embarked on a global effort with the purpose of further understanding and capturing the patients perspective on this matter, through a short survey which ran between March – October 2020.
The survey was translated in 7 languages and was distributed by electronic means only reaching over 10,000 individuals, including TIF Member organisations, Members of TIF Patient Advocacy Group, etc.
Read the Full Gene Therapy & Thalassaemia Survey Report HERE