Virtual Delegation Visit to France – 7 September 2020
A virtual TIF Delegation visit with stakeholders from France took place on 7 September 2020, with the Delegation Team consisting of Dr Michael Angastiniotis, TIF Medical Advisor, and Mr Rawad Merhi, TIF Countries Officer.
The Delegation Team during the virtual meeting had the opportunity to meet with approximately 20 patients, parents and treating physicians from across France and to learn about the current status relating to impact of COVID-19 on the patient community as well as to learn of the progress of introduction of new therapies (Reblozyl and Zynteglo – gene therapy). Moreover, identification of areas for improved social integration and education with the support of TIF were also discussed.
Main Findings:
- Educational material should be developed in French to overcome any linguistic barriers and provide wider access to information amongst French-speaking physicians and patients/parents.
- The lack of peer-to-peer support is a major issue for patients and their families leading to social isolation.
- The establishment of a Thalassaemia Working Group within SOS Globi has enabled the French thalassaemia patient community to be more active and united, noted in the celebration of International Thalassaemia Day in May 2020.
Adoption of TIF’s Classification of Risk Groups of thalassaemia patients and their vulnerability against SARS-CoV-2 has been adopted by the MCGRE.
