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As been shared with Thalassaemia International Federation
Sebagaimana yang dikongsikan oleh Thalassaemia International Federation
Sebagaimana yang dikongsikan oleh Thalassaemia International Federation
For the global thalassaemia family, the 8th of May constitutes a very special day as it is dedicated to both commemorate the thalassaemia patients who are no longer with us but are always close in our heart and to celebrate all those patients who are alive and fighting everyday for their right to a better quality of life.
On this special day, every year, TIF focuses on a different theme that intervenes with the quality and appropriate treatment of patients and impacts their quality of life.
2013
This year TIF is bringing to the forefront the treatment around thalassaemia intermedia and is inviting all national thalassaemia associations across the world and other patient support groups to find out more about this disease, within the theme:
“The right for quality health care of every patient with thalassaemia: major and beyond”
Hari Talasemia Sedunia – 8hb Mei
Bagi keluarga dan pesakit thalassaemia 8 Mei merupakan hari yang istimewa kerana ia merupakan hari dimana kita memperingati pesakit talasemia yang tidak lagi bersama kita. Ia juga hari dimana kita meraikan semua pesakit yang masih hidup dan berjuang setiap hari untuk untuk mendapatkan hak hidup yang lebih berkualiti. Pada 8 Mei setiap tahun, TIF memberi tumpuan pada tema yang berbeza. Ianya berkaitan dengan kualiti dan rawatan yang sesuai untuk pesakit dan kesannya kepada hidup mereka.
2013
Pada tahun ini TIF memberi tumpuan pada rawatan talasemia intermedia. Ia juga menggalakkan semua persatuan talasemia di seluruh dunia dan kumpulan sokongan untuk memahami lebih lanjut mengenai penyakit ini, dalam ruang lingkup tema:
“Hak untuk mendapatkan penjagaan kesihatan yang berkualiti pada setiap pesakit talasemia major dan seumpamanya”
Message from TIF's President
Perutusan dari Presiden TIF
THALASSAEMIA INTERNATIONAL FEDERATION
In official relations with the World Health Organization
PO Box 28807, 2083 Strovolos – 31 Ifigenias, 2007 Strovolos, Cyprus
Tel: +357 22 319 129 Fax: +357 22 314 552 Email: thalassaemia@cytanet.com.cy
Website: www.thalassaemia.org.cy
Dear friends,
Dear collaborators,
The decision to adopt one day of the year to spread awareness and knowledge on aspects of prevention and management of thalassaemia, derived from the need to unite and strengthen the patients’ voice worldwide: an essential pre-requisite to achieve our mission towards the promotion of equal access to quality health care.
Every year on the 8th of May since 1994, we bring to our memories and pay respect and recognition to all those anonymous and eponymous patients, parents and families who have fought towards a better future for patients with this disease and are unfortunately no longer with us but indeed 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.
Every year, TIF proposes a different theme and encourages member associations and officials to focus on it with activities and actions.
This year’s Thalassaemia Day is devoted once again to the rights of patients for quality health care. However, we extend this year’s focus on patients beyond those with β-thalassaemia major.
More specifically, this year’s theme is: "The right for quality health care of every patient with thalassaemia, major and beyond."
Thalassaemia International Federation calls the global thalassaemia family, i.e. all the patients’ associations, members and non-members, the global health-professional community, national and international health authorities and organizations, to unite their voices and enhance the awareness on thalassaemia and other haemoglobin disorders and on their control. It is essential and very timely to extend and diffuse the knowledge and experience that has been accumulated and gained through the years in many parts of the world, not only for β-thalassaemia major but also for other non-transfusion dependent or infrequently transfused forms of thalassaemia. The latter are forms of haemoglobin disorders which for many decades remained under-estimated and under-recognized with regards to their clinical significance. The natural history and the medical needs of patients with such forms of thalassaemia such us β-thalassaemia intermedia, HbE/β-thalassaemia and HbH disease (α-thalassaemia), were indeed very poorly understood and consequently inappropriately addressed clinically.
High rates of morbidity and very poor quality of life have been noted and reported for decades amongst these patients.
Considerably more knowledge exists today, which is scientifically based, and data are available to guide the medical community and the national health authorities to MOVE FORWARD and develop and implement prevention and management protocols tailored to the needs of these patients.
Today this patients community is ‘’fortunate” because mainly as a result of the focus and research on β-thalassaemia major through the years, considerable knowledge, expertise and experience are on the table for scientists and researchers to build on and extend support to patients with these other forms of thalassaemia.
We therefore encourage first and above all, you, the global patient community on this day and through the next year to become knowledgeable on this new information and to spread awareness aiming to sensitise every related stakeholder and partner in this fight, including the medical community, the policy makers and the industry.
TIF has also prepared a position paper in 2012 (position paper 5.4) on this topic which is available on our website, www.thalassaemia.org.cy and we will shortly provide you with a proposed campaign kit containing patient-oriented information. The kit will also include a video with patients’ stories, logo, banner and other documents to facilitate your activities in you countries.
We propose a workshop and/or a press conference, in 2013, in every country to allow you to communicate effectively this year’s message.
Dear friends, under such economic global austerities, it is our responsibility and duty as patients organisations, while continuing the fight for adequately managing β-thalassaemia major, to focus on improving the health and lives of our friends with these other forms of haemoglobin disorders. Unless we, ourselves, become knowledgeable and true ambassadors of these advances, these conditions will continue to remain under-recognised and under-estimated.
I would like to end up this short introduction, with a few of our strong messages:
"Unity is our strength"
"Knowledge is our power"
"Nothing for the patients, without the patients"
"Equal access for quality healthcare for every patient"
Best regards,
Panos Englezos
President
Thalassaemia International Federation
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