May 8th, 2023 is the International Thalassaemia Day!
The theme of the event this year is “BE AWARE.SHARE.CARE.: Strengthening Education to Bridge the Thalassaemia Care Gap”. By maximizing the knowledge and skills of patients affected by thalassaemia and the people who care for them, positive changes in health behaviours, health outcomes, quality of life and disease burden can be achieved.
We firmly believe that patients are key actors in the scientific research process and healthcare advancements. We encourage patients’ involvement in this framework to ensure that their health needs are better identified and met. Therefore, we are actively committed in providing patients and citizens with accurate and reliable information on specific topics.
We have a long experience in the field of hemoglobinopathies, particularly Thalassaemia and Sickle Cell Disease.
What do you know about thalassaemia?
You can learn more by consulting our Guide “Living well with Thalassaemia” aimed to provide a supporting tool to families and thalassaemic patients, to improve knowledge in the illness itself and in therapeutic solutions. It was developed within the Deferiprone Evaluation in Paediatrics – DEEP project, in collaboration with Fondazione Italiana “Leonardo Giambrone” per la Guarigione dalla Talasemia e Drepanocitosi, and translated in 6 languages.
Feel free to contact us for additional information about the guide.
A focus on blood transfusions, that are crucial for patients with thalassaemia, was provided in a dedicated leaflet available both in English and Italian language.
What about Sickle Cell Disease? A guide on it is also upcoming! We are working on it within the African Research and Innovative Initiative for Sickle Cell Education - ARISE project, coordinated by Fondazione Gianni Benzi, aimed at creating a multidisciplinary staff exchange programme to share and spread the best practices in Newborn Screening, diagnosis and treatment of Sickle Cell Disease. To date, more than 35 secondees have already had the opportunity to be hosted in several institutions among the ARISE partners, including Fondazione Gianni Benzi, and learn more about Sickle Cell Disease.
In addition, creating a network has a key role in the sharing of knowledge and expertise to improve the health and wellbeing of patients. To this aim, we are actively involved in the activities of the International Hemoglobinopathy Research Network - INHERENT that includes an ad hoc working group focused on translating the knowledge on haemoglobinopathies.
Keep following us to discover more about our future activities!
