Royal thalassemia advocate HH Sheikh Zayed bin Sultan bin Khalifa Al Nahyan inaugurates exhibition

16 national thalassemia societies come together to discuss latest treatments and benefits

Abu Dhabi, UAE, 21 Oct 2013

Over 30 exhibitors, including 16 national thalassemia societies from as far afield as the USA and Argentina, provided thalassemia patients and their parents with the latest knowledge of scientific breakthroughs affecting their everyday life at the Thalassemia International Federation's first-ever global exhibition on the disease.

The expo was opened by HH Sheikh Zayed Bin Sultan Bin Khalifa Al Nahyan, Chairman of the HH Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation at ADNEC, Abu Dhabi, held alongside the 13th TIF World Congress 2013, held under the patronage of His Highness General Sheikh Mohammed bin Zayed Al Nahyan, Crown Prince of Abu Dhabi and Deputy Supreme Commander of the UAE Armed Forces.

"TIF has been instrumental in gathering the international thalassemia community of doctors, nurses, patients and their families, scientific organisations, pharmaceutical companies, national societies and even governments willing to listen to our cause," said Panos Englezos, President, Thalassemia International Federation.

"The need is still prevalent, especially in the Middle East, and it is heartening to know the immense efforts of the UAE Government, the Emirates Thalassemia Society and the HH Sheikh Sultan bin Khalifa Humanitarian and Scientific Foundation to further the thalassemia cause."                  

The Global Pavilion of Thalassemia Societies at the exhibition represented 16 countries - UAE, Iraq, Kuwait, Lebanon, Iran, Egypt, Oman, Palestine, Yemen, Maldives, Morocco, Hong Kong, UK, USA, Australia, and Argentina.

Saeed Al Awadhi, Member on the Board of Directors for TIF, a thalassemia patient himself, said: "As a newly recognized health issue the world over, we hope to enlist the support of more such regional societies to participate in our biennial event.

"Patients are more aware of their disease now and the exhibition and congress provided them an opportunity to discuss suitable treatments and medical therapies that suit them because each patient needs different type of medication.

"Currently the UAE is the only country in the GCC that provides free medication for Thalassemia patients both expatriates and locals."

The exhibition also saw pharmaceutical companies like Novartis and ApoPharma Inc; manufacturers such as ResonanceHealth that sell FerriScan - an MRI machine to measure liver iron concentrations; SmithsMedical which sells medical devices; transfusion technology providers like Fresenius Kabi; organisations like the Sheikh Sultan bin Khalifa Al Nahyan Humanitarian and Scientific Foundation, Emirates Thalassemia Society and the Sheikh Hamdan bin Rashid Al Maktoum Award for Medical Sciences; and the event sponsors, all showcasing their efforts at alleviating the disease.

Lawrence Isaacs, Associate Director, Marketing and Business Development of ApoPharma Inc, a company that sells the Ferriprox drug said: "We are here to educate physicians on treatment ideas, the management of transfusions and how patients can help avoid the excess buildup of iron in their bodies because of blood transfusion. Our drug Ferriprox helps patients live a more secure life."

TIF 2013 is hosted by the Regional Collaborating Office of Thalassemia International Federation (RCOTIF), HH Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation and the Sultan Bin Khalifa International Thalassemia Award, and is supported by the Emirates Thalassemia Society, Abu Dhabi Heritage Village and Abu Dhabi Tourism & Culture Authority. The Congress is sponsored by Novartis, ApoPharma and EMAL amongst several other international organizations present at a parallel exhibition.

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The UAE Government provides free treatment for Thalassemia patients.

Being an inherited disease, chances of developing Thalassemia symptoms increase to 25% when both parents are carriers. Thalassemia occurs when there is a defect in the gene that controls production of proteins in the hemoglobin, which can lead to anemia. Thalassemia can be managed by following treatment plans, monthly blood transfusions and daily expensive medications. The only curative treatment for Thalassemia is a bone marrow stem cell transplant, but only a small proportion of patients are able to find a good donor match, and the procedure is risky.

Thalassemia is a major public health issue in the UAE, which affects so many families at social, medical, financial and psychological levels. Regular blood screenings campaigns in general are the best way to help reduce the presence of hereditary diseases in the country.  Certain diseases like thalassemia and diabetes have especially high prevalence in the UAE, and this is the first step in identifying a problem that could extend for generations to come. A great deal of scientific data has in fact been documented to show trends of selected genetic disorders in UAE communities, and it is the mission of the HH Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation to improve the quality of life of compatriots and alleviate human suffering.

About TIF World Congress 2013:
Abu Dhabi will play host to the Thalassemia International Federation (TIF) World Congress 2013,  the biennial educational event comprised of the 13th International Conference on Thalassaemia and Haemoglobinopathies, and the 15th TIF International Conference for Patients and Parents - which is being hosted in the Middle East and Africa region for the first time. TIF 2013 takes place 20-23 October at Abu Dhabi National Exhibition Centre (ADNEC) and will host scientific sessions on the latest updates in Thalassemia, presented by more than 100 internationally recognized speakers. The organizers expect over 2000 delegates from several countries across the globe.

Abu Dhabi was voted the joint most popular destination (along with Dubai) to stage events in the MENA region in 2012, according to the REED Middle East Meetings Industry Report 2011.

About Thalassaemia International Federation:
Thalassaemia International Federation (TIF) is a non-profit, non-governmental patient-driven organization founded in 1986 and working in official relations with the World Health Organization (WHO) since 1996. TIF is an umbrella organization involving 108 national Thalassemia associations and other members from over 55 countries across the world. TIF has been in official relations with the Non-Communicable Diseases/Human Genetics Department of the WHO since 1996. In addition they collaborate with other relevant departments of the WHO, the European Commission, national, European and international patients' organizations, pharmaceutical industries and agencies, as well as other health-related bodies with an interest in Hemoglobinopathies, blood safety and public health in general. To date, TIF has organized 65 delegation visits in 60 countries worldwide and 44 local, national, regional and international educational events (conferences, workshops and seminars). Some 18,000 health professionals, patients and parents from over 60 countries have participated in these events.

For further information please contact:
Melissa Green
Action UAE
T: +971 (0) 56
E: melissa.g@actionprgroup.com

© Press Release 2013