In celebration of the International Thalassaemia Day 2022, the Thalassaemia International Federation (TIF) and the Fondazione Italiana ‘L.Giambrone’ per la guarigione della Thalassemia’ (FITHAD) are joining forces for a special online Capacity Building Event, entitled “Exploring the value of patient advocacy for better thalassemia care” that will take place on Saturday, May 7th, 2022, from 15:30 to 18:00 CET.
The objective of this meeting, which brings together eminent haemoglobinopathies specialists and expert patient advocates from Italy and other countries, is to highlight the pivotal value of advocacy in enabling the patients’ active and meaningful participation in decision-making processes regarding their condition and in achieving more inclusive and accessible care for themselves and their communities.
Watch the full video of the event HERE
Patient Advocacy for Thalassaemia in Italy
Despite being considered a rare disease in Europe, thalassaemia is an indigenous condition in Italy with a high prevalence mainly in the southern regions, Sardinia and Sicily. Nowadays, it is spread almost everywhere in the country.
This disorder has been officially recognized as a public health concern by the Ministry of Health in the 1960s, therefore, a prevention programme has been implemented in order to detect healthy carriers. Patient organizations worked both locally and nationally since the mid-‘70s to facilitate the integration of patients in the social context, school, and work, to improve the quality of care and health services for the specific population, and to implement as much as possible a good multidisciplinary approach, at least in the major thalassaemia centers. Today, comprehensive care is provided free of charge for every patient across the country.
Leaning on the success of what had been achieved in the past, patient associations nowadays are less prone to work for improving those areas that still need to be addressed in order to keep an appropriate level of treatment, social, and other care, particularly in the field of the advocacy. All this considered, the purpose of this joint event is to disseminate in the Italian patients’ community the value of advocacy in terms of building capacities and knowledge on their condition, strengthening collaborations with decision-makers, and becoming able, as such, to play a pivotal role in discussions that will help achieve what is required from their communities.