Thalassaemia International Day 2014 - Executive Report

8 May 2014

International Thalassaemia Day ‘Economic Recession: Observe - Join Forces Safeguard Health’

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EXECUTIVE REPORT

8 May 2014

INDEX 1. INTRODUCTION 2. 2ND AMBASSADORS’ CIRCLE MEETING 3. PANCYPRIAN DRAWING CONTEST FOR STUDENTS OF JUNIOR HIGH SCHOOLS AND SENIOR HIGH SCHOOLS 4. INTERACTIVE DISCUSSION ON MEDICAL JOURNALISM IN CYPRUS 5. PRESS CONFERENCE—BLOOD DONATION CAMP 6. TIF’S INTERNATIONAL PHOTOGRAPHY CONTEST 7. PROJECT 8—“RED DAY” SCHOOL ACTIVITIES 8. CAMPAIGN KIT FOR THE INTERNATIONAL THALASSAEMIA DAY

8 May 2014

INTRODUCTION ‘ECONOMIC RECESSION: OBSERVE - JOIN FORCES - SAFEGUARD HEALTH’ Like every year, this year the Thalassaemia International Federation (TIF) honoured the International Thalassaemia Day with a different theme, aiming to fulfil the mission of enhancing lives and exceeding expectations for patients living with Thalassaemia across the world.

The theme for 2014 was ‘Economic Recession: Observe - Join Forces Safeguard Health’. This year’s theme emphasised the need to reduce health inequalities in countries affected by the financial and economic crisis.

TIF, therefore in the context of the International Thalassaemia Day and in the context of its internationally renowned educational program, which constitutes one of the most powerful means not only in achieving its mission and vision but also in raising awareness regarding Haemoglobinopathies around the world, has organised many activities leading up to the 8th of May. The events and activities for the International Thalassaemia Day 2014 have begun on the 2 May, with the Ambassadors’ Circle and ended on the 8 May with the Press Conference organized to honour this occasion.

In the following pages, we will share these activities in greater detail, as well as the suggestions for the upcoming year and the activities of our Member Association across the world.

8 May 2014

2ND AMBASSADORS’ CIRCLE MEETING 2 MAY 2014, HILTON, NICOSIA nd

For a second consecutive year, TIF has organized the 2 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.

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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, and 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.

This event has managed to reach a high level of publicity through media coverage. New collaborations have been initiated and existing ones were strengthened between TIF and representations of Member Countries’ Embassies who were present at this meeting. TIF aims to continue the Ambassadors’ Circle for the next year to strive towards further progress and towards truly supporting and safeguarding the right of every patient for quality healthcare in all of TIF’s member countries.

8 May 2014

PANCYPRIAN DRAWING CONTEST FOR STUDENTS OF JUNIOR HIGH SCHOOLS AND SENIOR HIGH SCHOOLS 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 st have organised the 1 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 th a total of 92 entries. The evaluation process took place on the 25 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, and Chrystalla Ioannoy. The second prize of 300 euros was given to Katerina Chrysostomou (Archbishop Makarios III High School) and Constantina Shacola. Th 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.

8 May 2014

INTERACTIVE DISCUSSION 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, from 10:30 a.m. to 12:30 p.m. at the Journalist House in Nicosia. This workshop was placed under the auspices of the Union of Cyprus Journalists, the University of Nicosia, and 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.

This event has reached a high level of publicity through media coverage in Cyprus. Seeing its great success, TIF aims to continue this workshop for the upcoming year.

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8 May 2014

PRESS CONFERENCE—BLOOD DONATION CAMP 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.

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. 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”.

8 May 2014

TIF’S INTERNATIONAL PHOTOGRAPHY CONTEST 8 MAY 2014, FAMAGUSTA GATE, NICOSIA TIF has organised an International Photography Contest in the context of this year’s International Thalassaemia Day 2014.

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: “Economic Recession: Observe - Join Forces - Safeguard Health”.

The deadline of the contest was 18 April and TIF has received a total of 125 entries. The names of the winners have been decided after the evaluation process which took place on the 25 of April and have been announced through TIF’s social media.

The winners of TIF’s International Photography Contest are: First Prize of 500$: Hugs – Truong Ngoc Son from Vietnam (ViTA)

Hugs by Truong Ngoc Son

Second Prize of 300$: Battling Dengue Fever Angtuaco Susana from the Philippines Third Prize of 100$: Joven Perfil - Silvana Andrea Cinquemani from Argentina 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 Famagusta Gate in Nicosia on the 8th of May 2014 to honour the International Thalassaemia Day. This activity has managed to spread awareness to the community at large about the rights of patients with Thalassaemia on a global scale.

Battling Dengue Fever - Angtuaco Susana

Joven Perfil - Silvana Andrea Cinquemani

8 May 2014

PROJECT 8—“RED DAY” SCHOOL ACTIVITIES 8 MAY 2014, NICOSIA TIF continued the Project 8 for a second year, 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

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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 Thalassaemia Centre, Dr Irene Savvidou, Haematologist 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.

8 May 2014

CAMPAIGN KIT FOR THE INTERNATIONAL THALASSAEMIA DAY Finally, TIF in order to empower its member’s 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.

For this occasion, TIF has also created a blog, dedicated to the 8th of May activities with the purpose of providing a means to the members of the worldwide Thalassaemia community to exchange ideas, chat, discuss, and make suggestions about the 8th of May activities around the world. We have invited all the members of the global Thalassaemia community to share their ideas and thoughts for the International Thalassaemia Day.

8 May 2014

MEMBER ACTIVITIES FOR THE INTERNATIONAL THALASSAEMIA DAY The International Thalassaemia Federation’s members organised events promoting awareness and knowledge with regards to the haemoglobin disorders worldwide. In the next lines are mentioned information regarding the activities that were held in some member countries.

UK Association Name UK Thalassaemia Society

PHILIPPINES Association Name Balikatang Thalassaemia Foundation in the Philippines

Events: Third sponsored walk (Alexandra Palace, th North London Sunday 4 May 2014) Participants: More than 100 people participated Trustees and their family members Media Value of the Events: Raise funds to support the association’s work over the next year Increased awareness and accessibility to information regarding Thalassaemia EGYPT Association Name Egyptian Thalassemia Association Events 15th International Thalassemia Conference, (7-8 May 2014, Cairo at the Cairo International Conference Center.)

Participants International and local medical scientists.

Patients and their parents Value of the Events Wealth of opportunities to network Provided all the recent updates on Thalassemia and to exchange scientific knowledge Policies for the health care of Thalassemia patients were discussed

Events Patient educational activities ceremony in Philippines to award health workers (doctors, nurses, midwives), declared as Thalassaemia Champions, Thalassemia Workshop on 8 May for Health Workers Blood donation activity on 14 of June for Thalassemia patients.

Participants: Health workers (doctors, nurses, midwives) Patients and their parents Local medical scientists Value of the Events Formalised the commitment of health professionals and introduced them to members of the Thalassaemia community.

Created awareness about Thalassaemia Prevention Program through screening, Blood Collected through blood donation programs, Education, Engagement Patient Empowerment

8 May 2014

INDIA Association Name Blood Patients Protection Council (BPPC)

Association Name Foundation Against Thalassaemia, Faridabad Event Recreational Activity focusing on a Musical program, (Central Park, Faridabad 7 May 2014)

Events Workshop at the Regional Science Centre & Planetarium, (Calicut Thursday, th on 8 of May 2014) Essay Competition for students of Junior and Senior High Schools affected by Thalassemia Award Ceremony for those who excelled in the SSLC public examination and the essay competition.

Participants Thalassaemia patients and their families The Minister of Education of Kerala, Mr P.K.Abdu Rabb Media Value of the Events Increased awareness regarding haemoglobin disorders.

Increased patients’ interest to get educated regarding their health condition through educational contests Association Name Thalassemia Society of Central India Events Workshop Recreational Activities including Performance arts, singing, and dancing

by Thalassemia Major Patients.

Participants Thalassemia Major Patients Medical Community Value of the Events Increased awareness Increased patients’ interest to get educated regarding their health condition through educational contests

Participants Celebrities Media Patients with Thalassaemia and their parents Value of the Events Increased awareness about Thalassaemia Increased patients’ interest to get educated regarding their health condition through educational contests PAKISTAN Association Name Pakistan Thalassaemia Welfare Society Events Special seminar for the International Thalassaemia Day Participants Mrs Al Jourah Abdullah Alarifi, Wife of Ambassador of Saudi Arabia in Pakistan, World known health professionals such as Dr. Saeed Elahi, Chairman of Pakistan Red Crescent Society.

Local representatives of the WHO Thalassaemia patients and their parents Elite medical professionals and local dignities.

Value of the Events Increased awareness regarding Thalassaemia Disseminated knowledge regarding Thalassaemia through the workshop

8 May 2014

Association Name Hamza Foundation Welfare Hospital Thalassaemia Center in Pakistan

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Events

USA Association Name Cooley’s Anaemia Foundation Events

Educational Activity for thalassemia patients and their parents (8 May Pakistan) Marathon to create awareness about Thalassaemia Participants Patients and their parents.

Value of the Events Raised awareness about Thalassaemia.

Raised awareness about the need to implement policies regarding the donation of blood and the prevention of the disease

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2 Walkathon to create awareness about Thalassaemia Participants Volunteers Patients and Parents Value of the Events Raise funds for research LEBANON Association Name Chronic Care Centre Events

AFGHANISTAN Association Name Meena Health Welfare Organization Events Recreational Event to celebrate the Thalassemia International Day 2014 (8 May in Kabul, Afghanistan) Participants Volunteers Patients and their parents Value of the Events Raised awareness about Thalassaemia.

Educational workshop on compliance and its importance to thalassemics Open discussion with the medical scientists Recreational activity for the children and thalassaemic patients in collaboration with Lebanese Red Cross Blood donation campaign TV session Awareness Participants Patients and parents Medical society Value of the Events Increased awareness about thalassaemia through media coverage Spread knowledge regarding Thalassaemia through the educational workshop and discussion Collection of Blood

8 May 2014

IRAQ Association Name Thalassemia Association in Nineveh

VIETNAM Association Name Vietnamese Thalassaemia Association (VITA)

Events

Events

Workshop entitled " Thalassemia: pain and hope" on (Monday 21 of April 2014, Hall of the Faculty of Science, University of Mosul) Participants Teaching staff and students Dean of the Science Faculty, of the University of Mosul, Dr. Imad Aldboni Value of the Events Spread knowledge regarding Thalassaemia through the educational workshop and discussion AUSTRALIA Association Name Thalassaemia Australia Inc. Events Recreational Event (Medical Therapy Unit for International Thalassaemia Day, 8 May) Cocktail with cake and gifts Visit from the Australian Red Cross Blood Service Recreational Activity with the participation of a Thalassaemia mascot, Billy The Blood Drop Participants Thalassaemia Australia Inc members and staff Thalassaemia Patients and their parents Value of the Events Raised awareness of the community Urged the community to join hands to prevent Thalassaemia

Awareness event (5-8 May) Screening for patients Workshops for patients in psychotherapy Workshop for Medical Professionals on diagnosis, treatment and prevention Participants ViTA members Healthcare staff, Patients/Parents Media Value of the Events Raised awareness about Thalassaemia to the community through media coverage Urged the community to join hands to prevent Thalassaemia Prevention through screening programs Disseminated knowledge about Thalassaemia through a variety of educational activities

8 May 2014

Consequently, this year’s 8th of May activities reached a very high level of publicity and the goals of the organized activities, which were focusing on expanding knowledge and awareness regarding haemoglobin disorders towards all age groups and social levels, were significantly achieved. There was a wide-spreading participation from TIF’s member associations.

Therefore, TIF, through these activities, has managed to send to the official related stakeholders the message that the Thalassaemia International Federation will overcome any obstacles that interfere with its mission, which is the establishment of equal access to quality health care for all the patients with Thalassaemia.

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Thalassaemia International Federation PO Box 28807, 2083 Strovolos, Cyprus Tel: +357 22 319 129 Fax: +357 22 314 552 Email: thalassaemia@cytanet.com.cy