A high level parallel need of health professionals and patients in the field of Red Blood Cells
(RBCs), Haemoglobin Disorders and Rare Anaemias.
The Thalassaemia International Federation (TIF) is delighted to inform you about the organization of the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias, which is scheduled to take place on 07 – 09 November 2014 in Athens, Greece.
This Conference is organized by TIF in collaboration with the Greek Thalassaemia Federation (EOTHA) and under the auspices of the Hellenic Society of Haematology and of the Greek Ministry of Health. This Conference will also and very importantly be observed by the European Commission, European Parliament and the European Hematology Association. Representatives of these European Institutions will actively participate and in addition deliver keynote speeches. The Conference is held under the patronage of Mr Tonio Borg (ex EU Commissioner for Health).
Another important partner in this conference is the European Network for Rare and Congenital Anaemias, ENERCA, an EU funded project/network which aims to improve services for haemoglobin disorders and other rare anaemias to both medical professionals and patients alike. TIF is an active partner in this project, since its initiation back in 2008, and is responsible, in this current phase of the project, to create an electronic registry for the epidemiological surveillance of rare anaemias in Europe.
Constituting a congregation of the most important actors in the field of haemoglobinopathies and rare anaemias in Europe, the Conference aims to bring together over 400 stakeholders, medical specialists, patients, researchers, policy makers and the industry from 28 EU Member States and other neighbouring countries mainly of the Middle East – the general objective being to discuss avenues of action to tackle the many health inequalities across the EU with focus on haemoglobin disorders and rare anaemias. These and other chronic, particularly rare diseases, add significantly to the public health burden and constitute, for some time now, but particularly in more recent years, a growing concern to everyone involved in the field. And this is a result of today’s global and European austerity which may, if not appropriately addressed, jeopardize severely the quality and range of public health and social services provided to these patients, violating basic human and patients rights.
Furthermore, key themes of the Conference will be patient empowerment through the discussion of new and upcoming European policies that are directly or indirectly related to health and quality of life of patients with these disorders.
Two important events will constitute the milestones in the history of TIF’s conferences:
- Submission of a Manifesto to the European Union
In light of the devastating effects of the current economic crisis in the field of healthcare, a dedicated session to discuss the concerns of the scientific and patients communities, has been included in the programme. As a result of the proceedings of this session, a consensus document or “manifesto” will be conducted, concerning the development of a common European strategy for the development of effective programmes for the prevention and management of haemoglobinopathies and rare anaemias in Europe. This strategy and proposals will be included in the manifesto, which will subsequently be submitted to the representative of the European Commission for consideration and adoption.
This Conference and manifesto provide an excellent opportunity to highlight the significantly vast and multifaceted contribution of Greece, Italy and Cyprus in the field of haemoglobinopathies at national, European and global level.
- “Guidelines for the Management of Transfusion Dependent Thalassaemias (TDT), 3rd edition”
The official launching of the new edition of this important publication will take place in the context of this 4th Pan European Conference.
Guidelines have an important role in the provision of equitable, consistent and quality care for patients particularly those suffering from these chronic diseases, and consequently TIF has focused considerable attention to their publication since the late 90s. Guidelines are now an essential and imperative component of patient centered national health systems particularly in the context of the European Union policies.
TIF’s three previous editions of the ‘Guidelines for the Clinical Management of Thalassaemia’ (1999, 2007, 2008) have been amongst the most important activities of TIF and had perhaps the greatest impact in the context of its educational programme. To compile these guidelines, experts in the field considered all available scientific evidence, clinical experience and practices, and upgrade carefully the 3rd edition of guidelines and recommendations aiming primarity to help clinical decisions. There was no such complete source of information prior to this, and in fact the last document produced by WHO is a very short version of guiding information dates back in the 1970s and 1980s. It is worth noting that WHO recommends to its member states at the Regional and international level the use and adoption of this publication of TIF.
TIF considers that the contribution of this book to the education of the medical community and as a decision support tool, has been exemplary in addition to its use as reference material for National Health Authorities (NHAs) and policy makers, including WHO, to plan and take action on treatment/reimbursement and other health polices for these diseases. It has indeed given the interest and solid basis to others to follow and prepare their own standards of care or national guidelines.
Beyond these two aims the conference will discuss the latest developments in these haematological conditions, including innovative treatments such as gene therapy, now the subject of ongoing clinical trials.
This conference will be a truly unforgettable experience. It has an extremely interesting and informative programme, touching all aspects of concern, success, research, hopes and expectations. Each topic is covered by an expert or group of experts – totally the faculty number reaching 50. Ample time is given for interaction and conclusions and we are more than sure that this conference will offer a unique forum of exchanging and sharing ideas. Attached you may find the programme for your information. Like all TIF conferences it will provide the opportunity for professionals from all corners of Europe to meet and interact, thus increasing the possibility of collaborations and networking. In addition there is the added opportunity of patient / expert interaction for the benefit of both.
Being genetic or hereditary in nature, these diseases bear immense social and economic repercussions, further to their significant public health burden and addressing them appropriately is an essential step in developing patient-centered health care systems – the prerequisite in current and future years in Europe and beyond.
As a patients’ driven organization, TIF asks the press to give the public as much information about the conditions as well as about the conference. These are conditions which can affect all people in all countries.
Thanks to science and medicine, haemoglobin disorders, thalassaemia and sickle cell disease can today be effectively prevented and appropriately treated with high survival rate and excellent quality of life where appropriate measures at national level are taken, including adoption of internationally recognized guidelines and standards of care.
Greece is the host country with remarkable to-date achievements in this field both in their prevention and management, and, in more recent years, in the promotion of research for TOTAL CURE. Countries in Southern Europe mainly Greece, Cyprus and Italy, have opened up and led the way to the success that has been achieved to-date in the control and care of these diseases.
They should continue to lead and guide the world – no economic or other factor should allow any drawbacks or jeopardise the quality of services provided to our patients.
Downgrading of such services will have a direct and immense impact on public health and national disease burden with immense social repercussions.
 The Thalassaemia International Federation (TIF) is an international non-profit, non-governmental organisation, which since its establishment in 1986, has had its base in Cyprus. In official relations with the WHO since 1996 it is an umbrella federation whose membership boasts 117 national thalassaemia patients associations from 56 countries in the world. Our mission is to promote optimal quality care for all patients with thalassaemia across the world.