TIF was invited to participate in the 7th National Meeting of the MCGRE Network on the 1st of February 2019, in Paris, France.
MCGRE is a network of health professionals and patients created in 2014, aiming to promote the care of patients with Haemoglobin disorders. The network works towards the establishment of common guidelines for clinical and laboratory practices, as well as to exchange best practices and facilitate the sharing of information and experiences for providing better quality healthcare services. Moreover, the network collaborates with patient associations to provide information and guidance to patients and their families.
During the course of the Meeting, TIF had the opportunity to present an overview of its work to the gathered audience (doctors, healthcare professionals and patients). The presentation, jointly delivered by the TIF Delegates, was translated into French to facilitate the understanding of the audience.
The delegation team held a follow-up meeting with the patients with thalassaemia who participated in TIF’s Twinning Programme (Dec. 2018; France/Cyprus), as well as with the leadership of SOS Globi (Federation of Haemoglobin Disorders Patient Associations), to discuss the further strengthening and empowerment of the thalassaemia patients’ community in France. , the Delegation had the opportunity to meet and discuss issues of concern with clinicians and other healthcare professionals regarding specific matters pertaining to the management of thalassaemia and policy/service planning tools.
Main issues highlighted:
- Clinicians, through their “filieres” (networks of clinician within the same hospital and nationally), identify all gaps and needs, in terms of equipment, expertise, holistic care and support, advocate for everything and make sure that patients have everything, even if there is a very small patient population in each hospital. That is the reason why patient associations are rather weak and clinical care is of excellent quality.
- Doctors are intrigued by educational and research opportunities within France, and to provide guidance and knowledge-transfer to French-speaking countries.