International Thalassaemia Day 2013 - Executive Report

Executive Report International Thalassaemia Day 2013 Thalassaemia International Federation (TIF) every year, since 1994 honors the International Thalassaemia Day, on the 8th of May, in the memory of all those patients, parents and families who have fought towards a better future for thalassaemia patients. Even though they are no longer with us, but indeed they have left to the world an immense and invaluable history of altruism, passion and commitment and have paved the way for all of us to continue.

TIF, therefore in the context of its internationally renowned educational program, which constitutes one of the most powerful means not only in achieving its mission and vision but also in raising awareness regarding haemoglobinopathies around the world, and in the context of the activities of the International Thalassaemia Day, organized a series of events in its headquarters base, in Cyprus.

More specifically TIF, organized a press conference on the 8th of May, spreading the message ''It is responsibility of all of us to secure the rights of patients with chronic diseases, even in times of economic crisis''. The Nicosia Municipality supported this Press Conference and the Mayor, Mr Konstantinos Yiorkatzis actively participated in the proceedings. Additionally in the context of the press conference, an exhibition of Dr. Michalis Psiloinis’ artwork was organized. The doctor has been the former Head of Limassol’s Thalassaemia Centre for many decades- a doctor with many incredible non medical talents! The press conference was successfully covered by the local tv channels and newspapers and Mr Englezos and Dr Eleftheriou were invited to the newscasts.

Moreover the Cyprus Blood Center in collaboration with the Nicosia Municipality, the athletic group PANSYFI Apoel and the Nicosia Fire Station has decided to devote their blood drives to the Thalassaemia International Federation and to the International Thalassaemia Day, a fact which will be established as an annual event.

Additionally, TIF initiated, in the context of the International Thalassaemia Day, the Project 8, aiming to diffuse knowledge and expertise regarding haemoglobinopathies, to all social levels, particularly amongst young people. In these lines TIF has taken steps to establish the ‘Red Day’ as a part of Project 8 at schools in Cyprus. Thus on the 9th of April TIF red team, visited the Grammar Junior School, and presented to more than 150 students, aged 10—12 years old, TIF’s new cartoon video ‘’About Thalassaemia’’ which was also followed by an interactive presentation regarding haemoglobinopathies. The students as they were actively involved in the proceedings of the Day, they wore red T-shirts with a stamp of ‘’Harry the red blood cell’’, who stars in TIF’s cartoon booklet and animated video, and they formed the number ‘8’ in their school yard at the end of the presentation.

Finally, TIF in order to empower its member’s activities around the globe disseminated a campaign kit, which contained the official 8th of May logo, the poster for the 2013 International Thalassaemia Day, and a video with patients’ stories. In addition TIF printed a special post stamp dedicated to the International Thalassaemia Day, and mugs which were given to the blood donors. The slogan written on the mugs was ‘’ I don’t know you but thank you! I am alive because of your blood and love!’’.

Consequently, this year’s 8th of May activities reached a very high level of publicity and in addition they were officially supported by IAPO and EPHA. On this note IAPO published an article with regards to the International Thalassaemia Day, on its online newsletter, and the EU Health Commissioner Tonio Borg issued a message for the Day in the European Commission’s website.

Therefore the goals, of the organized activities of the Day, which were focusing in expanding knowledge and awareness regarding haemoglobin disorders towards all the social levels, were significantly achieved. In conclusion TIF managed to send to the official related stakeholders the message that the Thalassaemia International Federation will overcome any obstacles that interfere with its mission, which is the establishment of equal access to quality health care for all the patients with thalassaemia.

We are eager to announce next year’s theme which is focusing in the power of unity and on the duty that we have as patients’ organizations in promoting and securing our patients’ fundamental rights as they are described in the EU Charter (2002) transposed to legal frames in many countries today, in periods of economic austerity - a national, regional and global phenomenon of today.

Our 2014 theme is:

‘Economic Recession: Observe – Join Forces – Safeguard Health’!

European Charter of Patients Rights (2002) 1. Right to Preventive Measures 2. Right of Access 3. Right to Information 4. Right to Consent 5. Right to Free Choice 6. Right to Privacy and Confidentiality 7. Right to Respect of Patients’ Time 8. Right to the Observance of Quality Standards 9. Right to Safety 10. Right to Innovation 11. Right to Avoid Unnecessary Suffering and Pain 12. Right to Personalized Treatment 13. Right to Complain 14. Right to Compensation Maria Apostolidou P.R and Communications Officer Thalassaemia International Federation