World Thalassaemia Day May 8th: Patient’s rights revisited

Patients themselves are not aware or misinformed in what exists or does not exist in their country

March 27th 2012

Today’s world is focusing on the reorientation of health care systems towards more patient centred ones, into which patients would have a role and a voice, and into which their opinion and contribution would be respected and recognised. The Thalassaemia International Federation (TIF), a non-profit, non-governmental patient-driven organisation involving thalassaemia associations and members from over 60 countries, will celebrate the next World Thalassaemia Day (May 8th) with activities oriented to the diffusion of patient’s rights.

The WHO, the EU and other health bodies across the world have focused considerable attention on safeguarding the basic rights of patients and it was not until 2002 that these took in Europe at least the form of a Charter (EU Charter) on the basis of which European Countries were encouraged and prompt to build their legislation.

However, a common devastating realization is the vast gap existing in many of these countries between the transposition into law and the implementation and evaluation of the impact of these on patients’ quality of life and active involvement in discussions on health care services. Still more worrying and painful is the realisation that patients in many more countries across the world including in many industrialised ones, have no defined rights, recognition and respect as patients and certainly no room for active involvement or participation in policy making.

On behalf of the patients, the great concern is that patients themselves are Not Aware, Do Not Know, are incompletely informed or misinformed in what exists or does not exist in their country. Join TIF on this 8th of May theme: “Patients Rights - Revisited” and organise events, workshops, discussions, print educational material, investigate and write to TIF how patients’ rights are protected in your country or region.

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