26/04/2022
International Thalassaemia Day 2022 -
Official Global Press Release
On International Thalassaemia Day, the Thalassaemia International Federation (TIF) unites the global haemoglobin disorders community, by raising awareness, sharing knowledge and bringing thalassaemia to the attention of as many people as possible worldwide.
NICOSIA, April 26, 2022 / Thalassaemia International Federation (TIF) - This International Thalassaemia Day, 8 May 2022, we recognize and celebrate the power of knowledge. The International Thalassaemia Day (ITD) 2022 theme, “Be Aware. Share. Care: Working with the global community as one to improve thalassaemia knowledge”, is an open call to action to all supporters to promote awareness about thalassaemia and its global impact and share essential information and knowledge to support the best possible health, social and other care of people affected by this disease.
With this core message, the global campaign conducted by TIF for the 18th consecutive year underscores the value of each individual contribution to reducing the prevalence of thalassaemia, whilst stressing that collective action towards enhancing awareness and understanding of the condition is crucial for its effective treatment.
‘’Despite the ‘spread’ of thalassaemia at an increasing rate worldwide, public awareness and information about the condition, in addition to concrete and tangible actions by competent healthcare authorities at the local level towards its effective prevention, control and management, remain significantly limited in many countries. Today we call for the intensification of concerted efforts and collective mobilization by all related stakeholders to change that’’, affirmed Dr Androulla Eleftheriou, TIF Executive Director.
It is indeed noteworthy that 8 out of 10 people with thalassaemia across the world are unaware that they have the mutated gene that causes the disease and that they could have a child with a severe form of thalassaemia, if their partner is also a carrier of the disease. As a result, more than half a million children are expected to be born with thalassaemia and other haemoglobin disorders worldwide by 2030[1].
‘’Improving awareness is the first, critical step to any kind of change. Although its value has been jointly recognized by governments, civil societies and healthcare professionals alike as a key component of sensitization towards thalassaemia, we need to do more to achieve greater understanding of this serious and potentially debilitating genetic blood condition and to allow the establishment and strengthening of disease-specific, patient-centred policies for better health, social inclusion and quality of life of affected individuals and their families’’, added Mr Panos Englezos, TIF President.
In celebration of the ITD2022 and seeking to reiterate that thalassaemia awareness and control must become a priority in public health at national, regional and global scales, TIF has launched a massive online campaign with rich communication and informational resources to disseminate the messages and useful information of the "Be Aware. Share. Care" theme, and to foster the active participation of all supporters.
Moreover, the Federation has developed 4 brochures that explain in a simple and comprehensive way a wide range of topics pertaining to the disease. This material has been made available for the first time in the history of TIF’s work, in more than 20 languages in an effort to reach out to as many individuals, stakeholders and NGOs as possible from all over the world and provide them with valuable insights into thalassaemia diagnosis, prevention, treatment, and research.
The International Thalassaemia Day 2022 will be observed in over 110 countries across the globe, where a multitude of awareness-raising events, blood drives, educational activities, scientific meetings, etc. will take place. TIF will actively join initiatives organised in Italy, India, Brazil, Greece, Egypt and Turkey.
Scientific advances for better care, quality of life, and even cure of patients with thalassaemia are at our doorstep and we all need to work towards making them accessible and available to our patients!
To learn more about International Thalassaemia Day, please visit https://thalassaemia.org.cy/itd2022/
