May 2014 | Volume 13, Issue 1
Dear Friends,
This month is marked by the celebrations for the International Thalassaemia Day, honoured each year on 8 May all over the world! Therefore, this month's newsletter is dedicated to the International Thalassaemia Day, providing information on some of TIF's many exciting activities which have been organised in the context of TIF's internationally renowned educational program. Read more about these activities in the pages to follow!
Editorial Team
TIF Around the World

The photography contest evaluation has been completed and the winning entries have been selected!
The selection process of the participants that have entered the photography competition entitled “Economic Recession: Observe – Join Forces – Safeguard Health” organised by TIF has been completed! The aim of the contest was to raise awareness about Thalassaemia and its subject was based on this year’s theme for the 21st International Thalassaemia Day.

We have received a total of 125 photographs, a number that surpassed our expectations! We would like to thank all of our contestants for their participation. We were delighted to receive such inspiring and touching photographs!

Winners of TIF’s International Photography Contest!

First Prize of 500$:  Hugs – Truong Ngoc Son from Vietnam (ViTA)
The cheeky smile on this boy’s face drew our attention immediately in this picture, which is contrast with the needle on his hand, a sign that blood was freshly drawn from him. This image sends the message that despite the difficulties that children with Thalassaemia face, they can live just like any other child and lead a happy normal life, with a little mischief.

Second Prize of 300$: Battling Dengue Fever - Angtuaco Susana from the Philippines
This photograph has captured the essence of this year’s topic which was in relation to the economic Recession and health, showing that in many different parts of the world limited resources do not allow for quality healthcare to patients.

Third Prize of 100$: Joven Perfil - Silvana Andrea Cinquemani from Argentina
This photograph symbolises hope, and the belief that a bright future lies ahead for patients living with Thalassaemia but also for the fate of this disease, with the wish that one day a holistic cure can be achieved.

All the entries of all the contestants were exhibited at a Press Conference organised by TIF in collaboration with the Nicosia Municipality which was held at the Famagousta Gate in Nicosia on the 8th of May 2014 to honour the International Thalassaemia Day.

Photographs from: Supriya Biswas (top, left), Amitava Chandra (top, right), Susana Marie Angela Angtuaco (bottom, left), Quang Toan Nguyen (bottom, right)



2nd Ambassadors’ Circle Meeting
2 May 2014, Hilton, Nicosia

For a second consecutive year, TIF has organized the Second Official Meeting of the Ambassadors Circle with great success.

Prominent diplomatic personalities, ambassadors, consuls, former ministers of Foreign Affairs of Cyprus, and other Official Embassy Representatives of TIF’s member countries have attended this Meeting on 2 May 2014, at the Hilton Hotel in Nicosia for an event dedicated to the International Thalassaemia Day.

The meeting was well-attended by more than 45 participants and total of 15 countries were represented by embassy delegates, namely of Australia, Egypt, Malta, Iran, Philippines, France, Spain, Nepal, Sri Lanka, Thailand, Greece, Syria, Italy, Cyprus and China.

The purpose of the aforementioned meeting was to inform foreign diplomatic missions in Cyprus about TIF’s activities in each one of the affected countries as well as the management and prevention protocols for Haemoglobinopathies in these countries.

Dr Valentino Matrelli, past Secretary of State of Foreign Affairs of Italy, Mr Alexandros N. Zenon , Director General of the Ministry of Foreign Affairs in Cyprus, Dr Erato Kozakou Marcoullis, Mr Markos Kyprianou, former Ministers of Foreign Affairs, of Cyprus and Mr. Charalambos Bakirtzis , Director of Anastasios Leventis Foundation were also among the distinguished guests of this meeting.

The Program of this event was of particular interest with world-renowned speakers such as Dr. Valentino Martelli who is also the Director of the Mediterranean Institute of Italy, Prof. George Marcoullis, Dean of the School of Medicine of the European University of Cyprus, Dr Androulla Eleftheriou, Executive Director of TIF, and Dr. Michael Angastiniotis, Medical Advisor of TIF.

TIF aims to continue the Ambassadors’ Circle for the next year, striving towards further progress and towards truly supporting and safeguarding the right of every patient for quality healthcare in all of TIF’s member countries.

Campaign Kit for the International Thalassaemia Day
TIF in order to empower its members' activities around the globe disseminated a campaign kit, which contained the official 8th of May logo, the poster for the 2014 International Thalassaemia Day, a video cartoon especially designed by TIF to honour this day, and the 8th of May message, addressed by TIF President, Mr Panos Englezos.

TIF Publications

Coming Soon!

  • Guidelines for the Clinical Management of Transfusion Dependent Thalassaemias (2014)


Important News!

  • TIF has established a new collaboration with the European Society of Emergency Medicine (EuSEM) in endorsing the book "Emergency Management of thalassaemia" and in distributing it to its members.

Translated Books

  • “All About Thalassaemia” cartoon translated in Turkish, Malay, Chinese, Burmese, Vietnamese and Sinhala

  • Translated Books - Coming Soon!
    • “A Guide for the Haemoglobinopathy Nurse (2013) in Greek and Farsi.
    • Emergency Management of Thalassaemia (2012) - Porter J, Taher A, Mufarij A, Gavalas M in Greek
  • About thalassaemia Cartoon in Bahasa Indonesian
    • Standards for the Clinical Care of Sickle Cell Disease of in adults (2008) Greek
  • Translated Videos - Coming Soon!

    • "7 Facts about Thalassaemia” is in the process of being translated in Bulgarian and Azerbaijani languages (2014)
    • “All About Thalassaemia” Cartoon is being translated into Bahasa Indonesian
International News

On Sunday 4th May 2014 the UK Thalassaemia Society,  held its third sponsored walk at Alexandra Palace, North London. After the success of last year’s walk, it was decided to would give participants the option of walking or running double the distance! More than 100 people participated and other Trustees and their family members. The event raised funds which will be a great help in supporting the association’s work over the next year.

The Egyptian Thalassemia Association has celebrated the 21st International Thalassemia Day, by organising the 15th International Thalassemia Conference on 7-8 May 2014 in  Cairo at the Cairo International Conference Center.

Cairo has provided the unforgettable setting for this meeting and gave a wealth of opportunities to network, to provide all the recent updates on Thalassemia, to exchange scientific knowledge, to discuss policies for the health care of Thalassemia patients. This conference was attended by international and local scientists.

The key topics of this conference were management care prevention, gene therapy, stem cell transplantation, iron overload and iron chelation, and pregnancy in female Thalassemic patients.  The social program was designed to provide many opportunities  to experience the culture, the red sea resorts  (namely in Hurgada and Sharm El Sheikh) and the beauty of Egypt.

The Balikatang Thalassaemia Foundation in the Philippines and the Quezon City Health Department have partnered with Novartis Healthcare Philippines to celebrate the International Thalassaemia Day on 8 May at the Quezon City Hall. The Balikatang Thalassemia Association (BATHA) focused on the following components, for this year’s International Thalassaemia Day, coded through BATHA's "Thalassaemia alphabet".

A - Awareness and Screening Programs
B - Blood Donation Programs
C - Iron Chelation Program
D - Diagnostic Monitoring (which includes ferritin, imaging, and other laboratory tests to monitor the status of iron overload)
E - Education, Engagement, Empowerment

Many activities have taken place to cover the above components, of which we will focus on the most important:
For the 8 May, besides the patient educational activities, the Balikatang Thalassaemia Foundation has organised a ceremony in Philippines to award health workers (doctors, nurses, midwives), declared as Thalassaemia Champions, who have undergone training through the Balikatang Thalassaemia Foundation Thalassaemia workshops. This event aimed to formalize the commitment of these health professionals and to introduce them to members of the Thalassaemia community.

In addition, in the context of the awareness and screening component (A), the Balikatang Thalassaemia Foundation organised a Thalassemia Workshop on 8 May for Health Workers with the aim of training them at the community/ grassroot level.

For the blood donation component (B), the Balikatang Thalassaemia Foundation in collaboration with the Galloner's Club, the blood donors group, are planning a blood donation fellowship activity on 14 of June for thalassemia patients.

The Blood Patients Protection Council (BPPC) in India organized a workshop in honour of the International Thalassemia Day at the Regional Science Centre & Planetarium, in Calicut on Thursday, on 8th of May 2014. Hundreds of thalassaemia patients and their families participated in this event with great enthusiasm.

The Minister of Education of Kerala, Mr P.K.Abdu Rabb, inaugurated this event, assuring patients and their families that active steps will be taken to help patients affected by Thalassaemia and other blood disorders.

A workshop was also conducted during this event covering various aspects of thalassaemia and its complications. A question answer session followed this workshop and publications relating to the prevention and clinical management of thalassaemia were also distributed to attendants.

During this event, cash awards were also granted to those who excelled in the SSLC public examination and to the winners of an essay competition organized for students of Junior and Senior High Schools who are affected by thalassemia. In the essay competition, C.Navya, (Calicut district) won the first prize. The second prize was granted to Maqsood Poovaduka (kasaragod district) and the third to Ameer Muhammed (Kannure district).

Media supported this event by offering coverage of this year’s International Thalassemia Day Celebrations in India.

World Renowned Journalist from BBC at TIF's Workshop on Medical Journalism in Cyprus
6 May 2014, Journalist House Nicosia

TIF has organised a workshop on medical journalism, held on Tuesday, 6 May 2014, at the Journalist House in Nicosia. This workshop was placed under the auspices of the Union of Cyprus Journalists, and the University of Nicosia. The Cyprus News Agency acted as the Communication sponsor.

The aim of the workshop was to discuss and exchange views, experiences, and knowledge on how media should cover health issues.

The main speaker at the event was the distinguished BBC journalist, Dr Patricia Mc Nair. Among the other speakers of this workshop were Dr Demetriou, President of the Pancyprian Medical Association, and Mr Makrides, President of the Union of Cyprus Journalists. Prof Peristianis, Dean of the Council of University of Nicosia acted as the coordinator of this workshop.

Seeing the great success that followed this workshop, TIF aims to continue it for the upcoming year.

Winners of the 1st Pancyprian Drawing Contest for students of High Schools and Senior High Schools announced!
6 May 2014, Journalist House, Nicosia

For the first time and in the context of the International Thalassaemia Day, TIF in collaboration with the Ministry of Education and Culture of Cyprus have organised the 1st TIF Student Drawing Contest entitled “Economic Recession: Observe – Join Forces – Safeguard Health” for High Schools and Senior High Schools (students from 12-17 years of age).

This drawing competition aimed to spread awareness about thalassaemia and sensitize students about patients’ equal rights to a quality healthcare system.
The deadline for the drawing contest was on 18 April and TIF has received a total of 92 entries. The evaluation process took place on the 25th of April where the names of the winners were decided.

The first three monetary prizes have been shared to enable as many students as possible to benefit from them.

The first prize of 500 euros was shared between 
Georgia Iakovou
Natalia Chrysostomou
Chrystalla Ioannoy



The second prize of 300 euros was given to
Katerina Chrysostomou (Archbishop Makarios III High School)
Constantina Shacola


The Third Prize of 150 euros was given to
Vanessa - Nasso Christou


TIF has also given 25 non-monetary awards and honorary  diplomas to students who excelled in the category Graphic Design, Junior High School, and Senior High School Category

The names of the winners have been announced during an Award Ceremony on 6 May 2014 at the Journalist House in Nicosia and all the entries for this contest have been displayed at an art exhibition  held on the same day.

In addition TIF plans on creating a special post stamp dedicated to the International Thalassaemia Day of the next year, depicting the winning entry of this contest.

Follow the Red Chapmions! Schools take part in Project 8—“Red Day” School Activities!
8 May 2014, Nicosia
TIF continued the Project 8, in the context of the International Thalassaemia Day, 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.
This year’s school activities took place at many schools including the GC School of Careers (28 students), Lykavitos Elementary School (46 students), the English School (180 students), and the Grammar School (90 students) in Cyprus on the 8th of May 2014.

The aim of these visits was to raise awareness about thalassaemia in students between 10-12 years old. The educational visits included activities targeting to inform students about preventing and treating thalassaemia. Furthermore, these activities aimed to promote equal access and equal rights to quality health care for all individuals.
The school activities for the day included the following:
> Educational presentation about thalassaemia especially designed for children by TIF.
> Projection of the Animated Cartoon “All About Thalassemia”
> Projection of the 8 May Cartoon
> Games and Quizzes
> Distribution of the cartoon book “All About Thalassemia” in English.

The school visits were effectuated by Mr Loizos Pericleous, TIF Board Member, Dr Soteroulla Christou, Head of the Cyprus Thalassaeamia Centre,  Dr Irene Savvidou, also of the Cyprus Blood Centre, and Mrs Natalia Michaelidou, President of the Pancyprian Thalassaemia Association.

We truly believe that the above activities have helped the students of these schools be properly informed about these diseases and to gain knowledge on how to prevent and treat them, while at the same time raising awareness on issues relating to the health system and its patients.

Press conference—Blood Donation Camp in honour of the International Thalassaemia Day!
8 May 2014, Famagusta Gate, Nicosia
TIF in collaboration with the Nicosia Municipality, organized a press conference on the 8th of May, spreading the message that the responsibility of all of us is to secure the rights of patients with chronic diseases in times of economic crisis. The Nicosia Municipality supported this Press Conference with the active participation of the Mayor, Mr Konstantinos Yiorkatzis.

Additionally in the context of the press conference, a photography exhibition was held, displaying all the entries of the 1st Photography Contest entitled “‘Economic Recession: Observe - Join Forces -Safeguard Health”.

In this framework,  the Cyprus Blood Centre in collaboration with the Nicosia Municipality, have decided to devote the blood drives  held on the 8th of May to the Thalassaemia International Federation and to the International Thalassaemia Day.

TIF video sharing platform for patients

TIF is ready to launch this new exciting platform which aims to initiate a two way interaction between TIF and patients on a global Youtube platform, allowing patients to submit their own videos on a revamped TIF YouTube page and to provide them with an incentive for uploading videos through a contest which will build up to World Thalassaemia Day with the publication of the winning videos. We look forward to receiving your videos!

The International Thalassaemia Day on 8th May, was also celebrated by the Pakistan Thalassaemia Welfare Society. A special seminar was arranged for the day, which was attended by Madam Al Jourah Abdullah Alarifi, Wife of Ambassador of Saudi Arabia in Pakistan, and many world knownhealth professionals such as Dr. Saeed Elahi, Chairman of Pakistan Red Crescent Society. Local representativesof the WHO were also present at this seminar. Thalassaemia patients and their parents also participated in this seminar along with the elite ofmedical profession and local dignities.

The Hamza Foundation Welfare Hospital and Thalassaemia Center in Pakistan organised an event on 8 May in Pakistan for thalassemia patients and their parents. This event also included a Marathon, created with the aim of raising awareness about thalassaemia.

Holding placards and banners, thalassemic children and their parents aimed to raise awareness about the need to implement policies regarding the donation of blood and the prevention of the disease in the province.

The Meena Health Welfare Organization, together with the Afghanistan Cricket Board (ACB), the Afghanistan Child Protection Foundation (ACPF), the Ihsas Social Association (ISA) andother Associations organized an event that gathered management, volunteers, and patients to celebrate the Thalassemia International Day 2014 on 8 May in Kabul, Afghanistan.

Furthermore, the International Thalassemia Day 2014 was honoured in Nagpur(Maharashtra) by the Thalassemia Society of Central India. In this context, an event was organised on 8 May in Nagpur which consisted of a workshop, and many other festivities including performances, singing, and dancing by Thalassemia Major Patients.

In addition, on 7May 2014, the Foundation Against Thalassaemia, Faridabad in India organised a musicalprogram at the Central Park in Faridabad. Many celebrities were present at this event which was covered by TV and radio channels.


Research & Therapeutic News

Phase II Study aims to Investigate the Benefits of an Improved Deferasirox Formulation (Film-coated Tablet) (ITHANET, 13/05/2014).

Unrelated Umbilical Cord Blood Following HLA-haploidentical Hematopoietic Stem Cell Transplantation in Patients With β-thalassemia Major (ITHANET, 13/05/2014). 

The World Health Organization and U.N. member states are dedicated to "urgent action" regarding the worldwide hepatitis pandemic, according to a resolution passed by the WHO's World Health Assembly (AABB 27/05/2014)

A study in the Journal of Clinical Investigation revealed that controlling the levels of sphingosine-1-phosphate, a bioactive lipid that regulates multicellular functions, reduced sickling of red blood cells in mice with sickle cell disease and could serve as a potential therapeutic target in humans. (ITHANET, 20/05/2014).

The European Commission has granted Janssen and Medivir approval to market their protease inhibitor Olysio, or simeprevir, in combination with other drugs, as a treatment for hepatitis C genotypes 1 and 4 infection (AABB 20/05/2014).

Researchers are looking for existing drugs and new compounds that can treat the Middle East respiratory syndrome coronavirus (AABB 20/05/2014).

Delegation Visits
See our next issue for delegation visits that are to take place


Keep Us Updated!
TIF encourages all its members to update their websites! We plan to upload your news and activities regularly and we will project important information from your Associations' websites.

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