The 13th and 14th of September 2018 a TIF delegation team, consisting of TIF’s Assistant Secretary, Mr. George Constantinou, and Professor Dimitris Loukopoulos, an international expert in thalassaemia and member of TIF’s International Medical Advisory Board, visited Paris-France.
The goals of the visit were:
- to present the work of TIF to French physicians and patient associations, seeking a closer collaboration in order to learn from their accumulated, across the leading Reference Centers in France, experience and expertise about thalassaemia,
- to learn about the quality of life of patients with haemoglobinopathies in France, and identify avenues of achieving their closer partnership with TIF.
To this end, the delegation team visited and met with representatives of:
- The ‘SOS Globi’ Federation of patients with sickle cell and thalassaemia
- The Haemoglobinopathies Center at Henri Mondor Hospital in Creteil
- The Necker- Enfants Malade Hospital
- The EURORDIS’ Paris Office
In addition, meetings with representatives of the European Commission, the French Ministry of Interior, the French Society of Haematology and the Ambassador of Cyprus in Paris were held, mainly focusing attention to socioeconomic repercussions of thalassaemia and its relation to migration flows.
Main issues highlighted:
French physicians have stated an interest in establishing a closer collaboration with TIF. Moreover, education of patients and appropriate training of the healthcare staff should be further fortified, as emphasized by all parties involved in the discussions.
Next steps to be taken:
- Further enhancement of healthcare professionals and patients’ awareness on thalassaemia and haemoglobin disorders, through:
– the translation of TIF’s educational material for patients’ associations and healthcare professionals into French,
– the promotion of TIF’s Thal e-course for patients and eThalED course for healthcare professionals,
– the organization of a dedicated workshop.
Continuation of collaboration with all stakeholders to provide further guidance and assistance, as and when requested.