Special Issue 2014 | Volume 17, Issue 1
Dear Friends,
This month brings to you a special issue of TIF's e-newsletter, containing all the major milestones and highlights of the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias which was held between 07-09 November in Athens. These milestones, from the delivery of TIF's consensus papers to EU officials to the official launching of TIF's publications including the 3rd edition of the Guidelines for the Transfusion Dependent Thalassaemia (TDT), have truly made this conference an unforgettable experience! Returning from Athens, we are reminded of how big our thalassaemia family actually is and, we, as TIF, express our commitment to join hands for equal access to quality health care for all those living with thalassaemia.
Editorial Team
Milestones and Highlights!

We are delighted to share with you that the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias, organized by the Board of Directors of the Thalassaemia International Federation (TIF) and the Greek Thalassaemia Federation (EOTHA) has been completed with immense success!

This Conference has been placed under the patronage of Mr Tonio Borg, former European Commissioner for Health & Consumers, the Hellenic Society of Haematology and the Greek Ministry of Health. It has also and veryimportantly been observed by the European Commission, the European Parliament, and the European Haematology Association through the delivery of keynote speeches in the programme.

Read more in the following pages, about all the important highlights of this conference.

Highlighting the succesful launching of TIF's publications!
A milestone in TIF's Educational Programme was the upgrading and the official launching of the Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT) during this conference which was held during the opening ceremony. All authors which have contributed to the publications were awarded and honoured during this special ceremony.

In addition, TIF has officially launched the translations of the following publications in Greek: the United Kingdom's "Standards for the Clinical Care of Sickle Cell Disease in Adults", the "Emergency Management of Thalassaemia", and the "Guide for the Haemoglobinopathy Nurse".


TIF, as a patient-centred organization that has been striving for decades to support the effective prevention and optimum patient care for patients with haemoglobinopathies across the world, wishes to thank and is greatly indebted to each and every one of the dedicated scientists andmedical specialists who have offered their time and labour freely to this vast and challenging work of updating the existing publications.

Their knowledge and scientific judgment are now disseminated across the world and TIF will exert every possible effort to ensure that health authorities in all countries and regions of the world adopt and apply these recommendations, even in times of economic austerity, for the benefit of citizens who, despite their inherited condition, are willing and ableto return the investment through their own labour and positive contribution to society, if kept healthy and with an acceptable quality of life.


Almost there: TIF's ThaliMe app officially presented during the Conference!
During this conference the official presentation was completed for TIF’s Mobile Application programme ThaliMe. The app is a few steps before its finalisation with the aim of greatly aiding and improving the lives of people with thalassaemia. This is a clever application designed specifically for the thalassaemia community with the depth of knowledge required to add true value to the community. Participants were offered a download link to test the application as well as a live demonstration during the conference. Mrs Lynda Brown, representing Curatio, has given this presentation.


Special focus to TIF's MSc E-Course programme in Thalassaemia and Sickle Cell Anaemia!
At the Conference, the MSc E-Course programme in Thalassaemia and Sickle Cell Anaemia, which is being established through the University of Nicosia and aims to offer a postgraduate academic course to health professionals in the field of Haemoglobinopathies has also been given special attention through its official presentation during the Conference Programme.

More details about this programme will be announced in future newsletters. To view the video spot, click here.

The 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias was marked by the Presence of TIF's dedicated booth, where TIF's publications were distributed to over 650 participants who were present at this conference.

TIF Greek Magazine with a special focus on the 4th Pan-European Conference of Haemoglobinopathies and Rare Anaemias!
The latest issue of the Greek TIF Magazine has been distributed during the conference, with a special focus on the 4th Pan-European Conference of Haemoglobinopathies and Rare Anaemias. Given this opportunity, we would like to thank and applaud Mr Ioannis Levidiotis, and his editing team KINISIS, for their efforts and contribution in the creation and distribution of the Greek edition of the TIF Magazine.

In the Spotlight : TIF's Video Challange!
We would like to thank all of you for your participation. We could not have done it without your help! We would especially like to thank those of you who have submitted their video on the platform upon receiving our request. We believe many patients will benefit from your stories and your inspirational words. It is so important to spread this message to all patients of the Thalassaemia community. We truly believe that your stories have served as the stepping stone for many patients to open up and tell their own story.

The selection procedure of the participants that have entered the video sharing platform competition organised by TIF is still in process. TIF aims to continue this effort in Europe for 2015. The winning entries will be selected,
announced, and shared soon with you on our social media and in the following issues of our e-newsletter!

All the entries of all the contestants were displayed during the 4th Pan- European Conference on haemoglobinopathies and Rare Anaemias in
Athens (07-09 November 2014).

To view the submitted videos click here.

Important Milestone: Delivery of Consensus Documents to EU Officials by Children with Rare Diseases

During the opening ceremony of this conference two consensus papers/ declarations were delivered to the representatives of the European Commission, the European Parliament, the representative of the Ministry of Health of Greece, the Senior Regional Migration Health Manager for Europe and Central Asia of the International Organisation for Migration (IMO), and will also be offered to the Government of each of the European member countries.

The delivery of these documents to the officials was completed by children of the Greek Alliance for Rare Disorders, each symbolising a rare disease.

 These two consensus papers are the following
- Access of Patients with Thalassaemia infected with Viral Hepatitis C to effective treatment or Cure. Click here to download it.
- The future of Haemoglobin Disorders and Rare Anaemias in Europe: Observations, Key Findings, and Recommendations. Click here to download it.

This conference has seen the wide-reaching participation of health profesionals and patients!
664 Participants
349 Health Care Professionals
315 Patients

27 - European Regions
7 - Middle East Region
3 - West Pacific Region
2 - Americas Region
2 - Africa Region
1 - South East Asia Region

Offering a multi-faced and unique Programme...

The extremely interesting and informative conference offered a unique platform of exchanging and sharing ideas and has touched touch all aspects of research, concerns, successes, and expectations. Each topic was covered by national, regional or international experts in this field.

The scientific programme covered a broad range of topics on the clinical management and multidisciplinary care and most importantly novel and innovative treatment methods for haemoglobin disorders and rare anaemias. The scientific programme, rich and multifaceted, has focused on issues relating to prevention, iron chelation, methods of treating complications and developing criteria for haemoglobinopathies’ reference centres and their accreditation, as well as the impact of the economic crisis in the health sector. World-renowned speakers, who specialise in the field of haemoglobinopathies, have participated in this conference.

Furthermore, through interactive discussion, the programme - dedicated to patients with thalassaemia and other haemoglobinopathies - focused on developing skills both to patients and to patients’ associations in Europe. The patients’ programme covered issues concerning the creation of a successful patient association with economic sustainability and development strategy to achieve its objectives. The organisation of the conference in Greece was an excellent opportunity, highlighting the remarkable achievements of the patient/parent community throughout the last decades and the struggle to preserve these rights in a background of economic austerity.

A particular focus has been given to patient empowerment as well as new and upcoming EU policies that are directly or indirectly related to health and quality of life. TIF through this interactive programme aimed to promote worldwide achievements in terms of medical and social issues. Apart from this interactive programme, patients for the first time have had the opportunity to participate in a special question and answer sessions with international experts. As expected the patients’ perspective and contribution, during the two days was strongly pronounced.

 Click the links below to view the Conference's programme :
Scientific Programme
Patients/Parents' Programme
 Click here for the Conference's website

Creation and strenthening partnerships!
TIF President, Mr Panos Englezos, TIF Executive Director, Dr Androulla Eleftheriou and TIF Medical Advisor, Dr Michael Angastiniotis met with representatives of the industry and of many countries during the course of the Conference.

In addition, the TIF Board of Directors' Meeting has been effectuated with great success! Board Members attended this Meeting, which was held at the Titania Hotel in Athens, on 9 November 2014.

During this meeting a number of key topics were presented and discussed, including aligning joint efforts, and identifying and planning future action.

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