World Thalassaemia Day 2020 is observed globally on 8 May every year. This day is observed to raise awareness about thalassaemia disease, its preventive measures and to avoid transmission and the importance of vaccination for children’s health, society and among the people throughout the world. Due to the COVID-19 pandemic, World Thalassaemia Day 2020 will be celebrated through different online activities.
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What is Thalassaemia Disease?
The Thalassemias are inherited blood disorders characterized by decreased haemoglobin production. Thalassaemia is a blood disorder in which your body has less hemoglobin than normal. This disorder is passed down through families. Hemoglobin is the protein in red blood cells that carries oxygen. Patients with thalassaemia suffer from anemia due to low levels of hemoglobin.
There are two main types of thalassemia:
- a-thalassaemia (or alpha thalassaemia) occurs when a gene or genes related to the a-globin protein are missing or changed (mutated), and
- ß-thalassaemia (or beta thalassaemia) occurs when similar gene defects affect production of the ß-globin protein.
Symptoms of Thalassaemia
The symptoms of thalassaemia may vary according to the type and severity of the disease. Some common symptoms may include-
- Pale skin
- Bone deformities
- Dark urine
- Constant fatigue
- Slow growth
- Abdominal swelling
History of World Thalassaemia Day
World Thalassaemia Day has been observed since 1994. Also, the Thalassaemia International Federation (TIF) organizes many diverse activities for the International Thalassaemia Day. The objective to draw the attention of the general public, patient associations, public authorities, healthcare professionals, and industry representatives, to fuel discussions and promote actions on a particular theme related to the prevention, management, or treatment of the disease in a patient-centered manner.
The World Thalassaemia Day 2020 theme:
The World Thalassaemia Day 2020 theme: “The dawning of a new era for thalassaemia: Time for a global effort to make novel therapies accessible and affordable to patients”.
The theme of World Thalassaemia Day last year was “Universal access to quality thalassaemia healthcare services: Building bridges with and for patients”.
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About Thalassaemia International Federation (TIF)
The Thalassaemia International Federation (TIF) is a non-profit, non-governmental organisation founded in 1986 by a small group of patients and parents representing mainly National Thalassaemia Associations in Cyprus, Greece, UK, USA and Italy; that is, countries who first recognised thalassaemia as an important public health issue and who began to promote and implement the first national programmes for thalassaemia control, including prevention and clinical management.
TIF was officially registered under Cyprus Company Law in 1987, and since 1996 it has worked in official relations with the World Health Organisation (WHO). Through the years, TIF has established collaborations and networks with a number of other official health orientated agencies and associations, and patient orientated organizations at the national, regional and international level. Today, TIF has evolved into an umbrella federation, with 232 member associations, in 62 countries of the world (Last update: December 2019), safeguarding the rights of patients to quality health and other care.