International Specialists’ Networks

A preliminary meeting of the Cardiology Global Network took place in the context of the International Conference in Antalya, Turkey, in May 2011. The second official meeting was organised in London on 24 November 2011, prior to one of TIF’s Board meetings in that year. During this second official meeting of the Cardiology Global Network, nine medical specialists and haematologists officially established the role of the network, which is to spread information and knowledge to cardiology specialists in countries affected with thalassaemia and ultimately develop specific guidelines for the management of cardiac complications due to iron overload in thalassaemia.

For more information or to join the network contact TIF’s Medical Advisor, Dr Michael Angastiniotis at michael.angastiniotis@thalassaemia.org.cy

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Cardiac complications in thalassaemia

The increasing life expectancy of thalassaemia patients, due to major advancements in the last 40 years in the areas not only of the clinical management of thalassaemia but also in the monitoring of disease related complications, has created the necessity to establish an International Network for Liver.

This Network constitutes of the following activities undertaken by the Federation:

With increasing specialization in thalassaemia treatment, our patients are being treated by a larger and more diverse group of medical professionals. Among these, the nurse has a very special role and a different, but equally valuable, contribution to patient care.

The thalassaemia nurse is often the bridge between the specialists, and is likely to be the member of the healthcare team who spends a lot of time with each patient. In fact, in some countries, the nurse may be the main or only health professional seen by the patient. She or he is an important source of information and advice. The special bond between patient and nurse can be a powerful motivating force for the patient, particularly with chronic diseases needing lifelong care and multi-faceted support. This relationship is worth encouraging due to its potential to improve health outcomes and foster a positive outlook.

The creation of the Global Nurses Network establishes a platform for nurses to share experiences and ideas with colleagues involved in the field from across the world. A major objective of the Network was to develop Guidelines on the management of Hb disorders from the nurses’ perspective, are now published under the title ‘A Guideline for the Haemoglobinopathy Nurse’.

If you are interested in joining the Nurses’ Network, please contact us at thalassaemia@cytanet.com.cy

The creation of networks of collaboration constitutes the major activity and a most valuable tool for our Federation, to obtain useful information and true facts about the health and other care services for our patients, and of course to promote its mission and objectives, which is the promoting of equal access to quality healthcare for every patient across the world.

Through such networks, close collaborations are built between and amongst health professionals and patients / parents, allowing the extension of TIF’s educational program and dissemination of its publications. Through such networks, friendships are built, difficulties, problems and concerns are identified, but also successes and experiences are shared and cherished.

The necessity to compile comprehensive data on the services offered by centres across the world which are known, or are reported as, or state that they treat patients with thalassaemia and/or SCD has become increasingly important. Furthermore, the outcomes of the ENERCA project and the deliberations of the EUCERD which focused for four years in promoting the criteria necessary for Reference Centres across Europe and the networking between them have provided the impetus for the Thalassaemia International Federation (TIF) to promote the increase of networking between Haemoglobinopathy Reference Centres across the world.

Specific Objectives of the Network

• Collect data from WHO Collaborating Centres and Reference Centres across the 60 countries in which TIF members are located and using quantitative analysis invesitgate the services, quality and methods of treatment across centres monitoring thalassaemia patients.
• Form an international comprehensive database of the services provided for haemoglobin disorders from Haemoglobinopathy reference centres.
• Assessment of the data through peer-reviewed published articles or personal reports will result in the identification of needs of of each centre to reach the expected criteria for Reference Centres (as per the EU description and criteria). Click here for more information.
• Advocate at the level of the Ministries of Health, with the collaboration of the local medical and patient community for promotion of criteria and key services in the centres across countries.
• Identification of international experts to prepare a publication on the minimum international criteria of Haemoglobinopathy Reference Centres and elaborate on the procedures for peer-reviewed services for haemoglobin disorders.
• Obtain the support and active participation of the WHO, ASEAN and EU for the aforementioned publication.
• Distribute publication to National Health Authorities in all TIF member countries and National Thalassaemia Associations as well as international regulatory bodies.
• Organisation of a launch event in the presence of the WHO, and EU with international media coverage aimed to highlight the benefits of safe drugs and the importance of a multidisciplinary team in the management of a multi-organ disease such as thalassaemia.

For more information on how you can become involved in this Network, please contact us at thalassaemia@cytanet.com.cy