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TIF calls for European collaboration on addressing the rare and chronic disease challenge at the 68th Session of the WHO Regional Committee for Europe

In the course of the 68th Session of the WHO Regional Committee for Europe that took place in Rome, Italy, on 17–20 September 2018, the Thalassaemia International Federation (TIF) called upon countries of the European Region to develop synergies for the effective management of rare and chronic diseases which are given a secondary role in the WHO Global action plan for the prevention and control of NCDs 2013-2020.

As a patients’ organisation in official relations with WHO since 1996, TIF was invited to participate in the conference with a delegation team consisting of Mr. Panos Englezos, President, Dr Androulla Eleftheriou, Executive Directos and Dr Michael Angastiniotis, Medical Advisor.

In the course of this 4-day high-level event, TIF delegates delivered three statements calling upon Europe to pay special attention to chronic, rare and hereditary disorders which require separate policies from those of major non-communicable diseases, promoted so far through the existing WHO strategies and action plans. Moreover, given that recent migration flows originate from countries with a high prevalence of hereditary haemoglobin disorders (thalassaemia and sickle cell) and end to low prevalence areas of Northern and Western Europe, TIF urged Member States to identify migrant patients and plan for their treatment in the best possible way, adopting policies for both prevention and optimal care. TIF also supported the “thank you” joint statement of all 19 regional non-State actors not in official relations with WHO, in an effort to stress the need for more active citizens taking part in the decision-making process.

The event was highly successful as health ministers and high-level representatives of the 53 Member States of the WHO European Region, as well as more than 100 representatives of Non-State Actors in official relations with WHO participated. Key topics of interest for Europe were discussed, including the European Health Report 2018, the regional Roadmap to implement the 2030 Agenda for Sustainable Development and the regional Action Plan to improve public health preparedness and response.

TIF would like to commend the work of the Regional Committee for Europe and express its readiness to provide advice and support to European countries, as part of its global efforts to effectively address the chronic disease challenge.

Host countries have a humanitarian obligation to assist and support these population groups, in receiving healthcare appropriate to their needs. TIF calls for the development of a draft global action plan on the health of refugees and migrants. Listen to the video here

Dr Michael Angastiniotis “Birth defects are in general underestimated. If we consider that there are more than 5000 rare diseases listed most of which are congenital and chronic and which according to western sources affect 6-8% of the population, even if each disorder is rare. This is not a negligible health burden when considering the chronicity and complexity of care that they require. […] Listen to the video here