NICOSIA: Thalassaemia International Federation (TIF) - The International Thalassaemia Day 2023, marked on 8 May, highlights the empowering force of education and its correlation with the appropriate and quality care of thalassaemia.

Building on last year’s successful campaign, the 2023 theme ‘Be Aware. Share. Care: Strengthening Education to Bridge the Thalassaemia Care Gap’ takes a further step ahead and focuses on the need for improved access to quality thalassaemia education for people living with the disorder and healthcare professionals involved in their care.

‘’Against a backdrop of global recession, growing inequalities and strained post-pandemic healthcare systems, on International Thalassaemia Day 2023 TIF calls for the health of thalassaemia patients to be prioritized ensuring that national infrastructures and services make basic and advanced care options available for every patient.

Echoing and aligning with the UN’s SDGs, and in particular Goal n.4, we firmly believe that this can only be achieved with quality, ongoing education for all stakeholders on the specific needs of thalassaemia patients. After all, education is the foundation of health and well-being, and a catalyst for bridging the care gap and fostering development in health interventions’’, stated Dr Androulla Eleftheriou, TIF Executive Director.
 
Better Education for Better Care

Evidence published in TIF’s Report ‘Global Thalassaemia Review 2022’ is revealing[1] on why thalassaemia-centred education should be further promoted. Today, still:

  • More than 70% of patients with β-thalassaemia globally receive suboptimal basic care in terms of blood transfusion and iron chelation therapy.
  • Blood insufficiency is experienced by more than 75% of patients with thalassaemia in low-and middle-income countries (LMICs).
  • In more than 90% of countries with medium- and high-thalassaemia prevalence, patients rely on out-of-pocket expenses to cover necessary healthcare costs.
  • Nearly 90% of the patient population worldwide has no access to multidisciplinare care and expert/reference centres.

‘’It is through consistent awareness and disease-specific education that we can draw attention to the myriad of challenges that people with thalassaemia continue to confront worldwide and bring about lasting and effective changes in health and social behaviours, improve health outcomes, quality of life and social integration, while helping reduce the huge burden of this disease in national healthcare systems’’, affirmed Panos Englezos, TIF President.
 
Working Together to Inspire Change

Marking the ITD2023 and seeking to reiterate that thalassaemia awareness and education must become a priority in public health at national, regional and global scale, TIF proposes a wide range of activities for all stakeholders on and around 8 May 2023. These will include a massive online ITD2023 awareness campaign, the brand-new educational TIFLIX platform with premium, on-demand video content for patients, healthcare professionals and NGOs, educational videos, capacity-building initiatives, and, as in last year, novel educational resources for patients in a variety of languages in an effort to provide them with valuable knowledge into key thalassaemia-related issues.

The International Thalassaemia Day 2023 will be observed in over 100 countries across the globe, where a multitude of awareness-raising events, blood drives, educational activities, scientific meetings, etc., will take place.

More information will be released promptly on the International Thalassaemia Day 2023 official page.

[1] TIF Publication. Global Thalassaemia Review  https://thalassaemia.org.cy/what-we-do/global-thalassaemia-review/ (2021)

CONTACT:
If you are interested in arranging an interview with a TIF representative or would like more information, please contact:  

Catherine Skari, Senior Communications Officer
thalassaemia-cs@thalassaemia.org.cy
+357 96108454

ABOUT TIF:

Thalassaemia International Federation (TIF), a non-governmental, patient-driven umbrella organisation, established in 1986, supports the rights of patients for access to quality health, social and other care through its work with over 235 national thalassaemia associations in 62 countries across the world. Founded by a small group of doctors and patients/parents who represented National Patient Associations, mainly from Cyprus, Greece, Italy, the UK and the US, i.e. countries where thalassaemia had been recognized early as a genetic, hereditary disorder with huge medical, public health, social and economic repercussions if left unaddressed in terms of both effective prevention and management.

Our Mission: The prioritisation of thalassaemia on national health agendas and the development and implementation of effective disease-specific control (prevention and clinical management) programmes within national healthcare systems based on universal coverage

Our Vision: To support the provision of equal access of every affected patient to high-quality health, social and other care in a truly patient-centred healthcare setting

Our Work: Education | Advocacy | Collaborations/ Networking | Research | Raising Awareness

Our Partners:

  • World Health Organisation: In official relations, since 1996
  • United Nations Economic and Social Council: In special consultative status, since 2017
  • Council of Europe: Participatory status at the Conference of International Non-Governmental Organisations, since 2019
  • European Commission: Official partners in the field of Health, since 2018 

ABOUT THALASSAEMIA:

The thalassaemia syndromes are inherited blood disorders that affect the production of the normal adult haemoglobin component of red blood cells. Beta thalassaemia is the most frequent and severe form of the disease, leading to the excessive destruction of red blood cells and thus severe chronic haemolytic anaemia.

Affected patients require lifelong regular blood transfusions from early childhood, combined with iron chelation therapy to prevent complications due to iron overload, such as cardiac morbidity, liver disease, cancer and endocrine dysfunction. To effectively manage the complications of the disease, consequent to disease pathology and treatment, the provision of multidisciplinary care is mandatory. A holistic approach to care also includes social participation and protection that lead to increased quality of life.

To find out more about TIF, please visit www.thalassaemia.org.cy