International Thalassaemia Day 8th of May 2004

"THALASSAEMIA AND HOPE"

Dedicated to all thalassaemic patients and parents who have never lost hope for life and to all implicated scientists who have never given lip and who, with their efforts and persistency, have given the hope, for a long good quality life, to our thalassaemics across the world.

World Thalassaemia Day 2004 is just around the corner. I know that every Thalassaemia Association around the globe will take advantage of this day, which is devoted to the strengthening of the lifelong and difficult struggle against thalassaemia.

The last three decades of clinical research have brought us many improvements in management even though a final cure has not been found. Adherence to the protocols of treatment that TIF has promoted, following the directives of the scientific advisors, are already bearing fruit as evidenced by the continuously improving survival rates seen in countries with developed services, as well as improved quality of life.

Ongoing research gives rise to new hope for the future in these three goals:

_Cure

_ Long Survival

_ Good quality of life

At this time cure can only be achieved by stem cell transplantation only for those who have a compatible related donor. However, every year we hear that better results are being reported using umbilical cord blood stem cells or using matched unrelated donors and other techniques in order to serve more and more patients. Gene therapy the final cure, still seems difficult to achieve but some breakthroughs have been reported.

Long survival can be achieved by adherence to treatment. Thalassaemia clinics are becoming more aware that they must improve their understanding and response to the psychosocial needs of patients in order to gain the highest degree adherence. The advent of new oral chelators will also help in this aspect. We are aware of a new drug coming on the market soon and several are being researched and are ready for human trials.

Other substances being researched are those that increase fetal haemoglobin (eg. Butyrates), antioxidants and more effective ways to treat heart, liver and endocrine complications.
One essential role of TIF, clearly stated in the constitution, is to promote all research that will improve the patients health. We have done so in the past and will continue to do so. Hope for a better future is an essential element in keeping to the present difficult treatment. Those in good shape will benefit most from new developments.

The Thalassaemia International Federation is by the side of every patient, parent and Association, every step of the way and closely collaborates with WHO and other health organisations and international experts in order to be able to support, assist and advise National thalassaemia Associations and Medical Centres across the world according to the means available to us.

TIF's motto "United we are strong" provides hope and encourages persistence in our efforts to keep fighting for our cause. Hope and action are the key elements to our success. TIF invites all Thalassaemia Associations and Medical Centres across the world to join forces on this special day and declare with a strong, united voice that our thalassaemics have the right to optimum treatment, that our thalassaemics have the right to life and hope for a better future must be kept alive in their hearts.

I wish to each and every one of you health, strength and success in all your efforts.

Panos Englezos TIF Chairman.