TIF Magazine - issue 64

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  • TIFMAGAZINE 2014 Issue 64 Published by the Thalassaemia International Federation www.thalassaemia.org.cy

    International Thalassaemia DayEconomic Recession: Observe - Join Forces - Safeguard Health

    2014 key activity:

    4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias, Athens, 07-09 November 2014

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    Foreword from the TIF President and Executive DirectorDear Readers,

    In this issue of our magazine you will find rich

    and enhanced content, both for TIFs international

    activities and participation in European, regional,

    and national events, as well as all the recent

    developments of TIFs internationally recognised

    Educational Programme. This issue, number 64,

    also aims to provide information on important

    upcoming activities and initiatives of the Federation

    for 2014 - especially regarding the activities of the

    21st International Thalassaemia Day and the 4th Pan-

    European Conference on Haemoglobinopathies

    and Rare Anaemias, which is to be held in Athens,

    Greece, on 7-9 November 2014, and is promising to

    be a unique conference.

    The involvement of TIF in the international scene

    grows stronger year by year with the intensification

    of its partnerships and fruitful collaborations with

    official regulatory bodies, health and disease related

    organisations, medical communities, and patient

    and medical specialist networks, in an effort to

    strengthen the voice of patients in policy-making

    procedures, to promote research and education and

    to participate in a multitude of joint projects in the

    cause of thalassaemia and the haemoglobinopathies.

    TIF maintains a close relationship with the World

    Health Organisation (WHO), particularly with the

    headquarters and regional offices, actively providing

    the patient perspective on a number of issues

    concerning the haemoglobinopathies. TIF has also

    worked diligently to strengthen relations with the

    Secretariat of the Association of South East Asian

    Nations (ASEAN) and with the Ministries of Health

    of the ASEAN member states, particularly in the

    context of organising a side-meeting in parallel

    to the 12th ASEAN Health Ministers Meeting

    that is scheduled to be held in Hanoi, Vietnam, in

    September 2014. Additionally, TIF continues to

    strengthen its collaboration with the European

    Liver Patients Association (ELPA), World Hepatitis

    Alliance (WHA) and European Association for the

    Study of Liver (EASL) with a view to promote the

    prevention and treatment of Hepatitis B and C in

    thalassaemia populations. Indeed, TIF participated in

    the International Liver Congress that took place on

    9-13 April 2014 in London. The Congress, which is

    organised annually by the European Association for

    the Study of Liver (EASL), provided a unique platform

    for specialists to debate, discuss and analyse the

    latest developments in the clinical management of

    liver disease. Furthermore, TIF, in the context of its

    scientifically-based Educational Programme, enjoys a

    strong partnership with the European Haematology

    Association (EHA) - demonstrated particularly by

    its participation in the Organising Committee of the

    Patient Advocacy Session of the 19th Annual Congress

    of the European Haematology Association (EHA), to

    be held from 12 - 15 June 2014 in Milan, Italy. This

    Congress hosts over 5,000 haematologists every year

    and provides the perfect location for the launching,

    this June, of TIFs new publication Guidelines for

    the Clinical Management of Transfusion Dependent

    Thalassaemias - 3rd Edition.

    Within the following pages you will also read about

    TIFs impressive plans for this years International

    Thalassaemia Day, which include the provision of a

    8th of May toolkit, available to our members to use

    for their activities on this Day. Furthermore, TIF has

    scheduled a number of awareness raising activities

    at schools, drawing and photography competitions, a

    press conference, and much more.

    With the theme for the 2014 International

    Thalassaemia Day on May 8 Economic Recession:

    Observe - Join Forces - Safeguard Health, we

    move forward to achieve our goals for access to

    quality treatment and optimal quality of life for

    patients. The global crisis that we are experiencing

    today is not only economic, but also extends to a

    crisis of institutions and values. However, besides

    national, regional, and international official services

    and health institutions, patients, each separately, and

    all together, have a very important role to play - to

    support, collaborate and act in solidarity, because

    the driving forces of any state are healthy and

    productive citizens.

    For TIF, the 8th of May is a day of remembrance and

    awareness - a day of recommitment to patients

    everywhere, dedicated to patients vested rights

    - a day of promise for a better tomorrow - a day

    to unite the voice of all patients and partners, to

    create a strong wall to prevent further inequalities

    Dr. AndroullaEleftheriou

    Panos EnglezosPresident

    JOIN US!

    Regional ConferencesMany healthcare challenges are specific to individual countries, however due to the great variety of health systems and differences in the quality of health services, many regions of the world with similar cultural, religious and linguistic features share certain common problems in the management and prevention of haemoglobin disorders.

    In recognition of this fact TIF has embarked on the organisation of regional conferences, which focus on the specific needs of each region of the world, as well as the particular challenges faced by each country within a region.

    Each regional conference constitutes a unique forum of knowledge and experience that takes into account the strengths, weaknesses, difficulties and challenges that are common across many countries of a region, while at the same time and building on regional success stories, enabling interested stakeholders to streamline and tailor their work and activities.

    For more information, email us at thalassaemia@cytanet.com.cy

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    of health both between and within countries, to

    face the threats brought upon us by the economic

    crisis. In the field of thalassaemia, a disease with a

    multidisciplinary approach, efforts continue for a

    patient oriented healthcare system, for the safety

    and sufficiency of blood, for the rehabilitation of

    patients with thalassaemia.

    The countdown has begun for the 4th Pan-

    European Conference on Haemoglobinopathies and

    Rare Anaemias, organised by TIF in collaboration

    with the Greek Thalassaemia Federation (EOTHA)

    and is scheduled to be held in Athens, Greece, on 7-9

    November 2014. It promises to be one of the best

    conferences, both in terms of its programme, but

    also its organisation as a whole. Participants will have

    the opportunity to enjoy an impressive programme

    which will cover all aspects related to the prevention

    and treatment of haemoglobinopathies and rare

    anaemias and discover all the latest developments

    related to these disorders across Europe. On

    behalf of the Board of Directors, we extend our

    warm invitation to the thalassaemia community of

    doctors, patients, and those who have pioneered in

    the field of haemoglobinopathies, to participate in

    this Conference.

    TIF remains close to the global family of patients

    worldwide, and restates its commitment to join

    forces with each National Thalassaemia Association

    in every country of the world, but also to work

    constructively as a valuable partner in order to

    preserve and safeguard the rights of patients,

    especially those with chronic and rare diseases.

    The establishment of equal access to quality

    health services remains the vision of parents and

    patients, the founders of TIF, but also the patients

    associations in 62 countries - members of TIF. We

    wish every success, through this issue in all your

    endeavours for the maintenance and promotion

    of patients rights that the years of struggle have

    managed to acquire.

    Technical specifications for photographs

    1. Photographs submitted for TIF Magazine should be in JPEG format (although .PDF and .TIFF are also accepted). 2. Photos should be print quality. This means: Thelargestsizepossible.PleasedoNOTreducetheimages!Sendthemeitheronebyoneviaemail,oralternativelyonaCD. High-resolution(atleast300dpi).Pleaseensurethatwhentransferringphotosfromadigitalcamera,ahighresolutionisselected. (How this is done depends on the camera model.)3. All photos should have captions - a short text explaining what is happening in the photo and the names of the people in the photo.4. It is the responsibility of the person submitting photos to ensure that any person(s) featured in them has given their permission to publish the

    photo. Disclaimer:Reproduction of material published in TIF Magazine for educational purposes is encouraged, provided it is accompanied by the following attribution according to TIF mag