The Thalassaemia International Federation (TIF) has organized a delegation visit in France, with the purpose of participating in the second associations meeting of the French Network MCGRE – Paris, on November 9, 2018.
MCGRE is a network of health professionals and patients created in 2014, aiming to promote the care of patients with Haemoglobin disorders.
TIF’s delegation team was composed of the Assistant Secretary, Mr. George Constantinou, and Mr. Rawad Merhi, Administration Officer.
Main issues highlighted:
- The size of the patients’ population with thalassaemia is significantly smaller compared to the patients’ population with sickle cell disease, hence healthcare services concentration and resources are mainly focused on the needs of the latter.
- A treatment protocol has been established with the contribution of all Haematologists looking after thalassaemia and sickle cell patients. It is available at the MCGRE Network’s webpage filiere-mcgre.fr
- Carrier screening is not available in France. There is availability for prenatal diagnosis, upon request.
Next steps to be taken:
- Strengthen the knowledge and seek to further empower patients with thalassaemia, e.g. through the organization of a dedicated workshop,
- Conduct a follow-up visit to France to present the progress in TIF’s work to French physicians and patient associations.