Dear friends and esteemed collaborators,
The Thalassaemia International Federation (TIF) since its establishment in 1986 has been a pioneer in providing the patients’ perspective in all health-related areas including policy-making, research, clinical trials, drug development etc, in a transparent manner, as laid out by its Code of Ethics. Moreover, TIF’s Educational Programme, and in particular its Expert Patients Programme has been a true innovation in the field of health – an example followed by many.
Indeed, the European Organisation for Rare Disorders (EURORDIS) has recently announced the creation of disease-specific Community Advisory Boards (CABs), as an extension of the above-mentioned TIF Expert Patients Programme.
TIF works closely with EURORDIS to promote the needs of patients with thalassaemia and sickle cell disease at the international level, most notably through Rare Diseases International and actions at the United Nations Economic and Social Council (ECOSOC) and World Health Organisation (WHO). Moreover, TIF also collaborates with EURORDIS to promote the rights of patients with rare diseases at the national, regional and European levels through the Cyprus Alliance for Rare Disorders (of which TIF is a founding member), that coordinates the EURORDIS Small EU Countries Working Group.
Therefore, despite initial reservations and upon second thoughts and having the deepest respect for the work that EURORDIS accomplishes and acknowledging the high quality and professionalism with which all its initiatives are brought to fruition, Mr Panos Englezos (TIF President) decided that it would be of benefit to the patient community to be involved in this initiative. Hence, Mr Englezos has mandated has decided to mandate Dr Androulla Eleftheriou (TIF Executive Director) and Dr Michael Angastiniotis (TIF Medical Advisor) to represent the global thalassaemia community, and participate in discussions initiated by EURORDIS for creating a Community Advisory Board (CAB) for thalassaemia and sickle cell disease in Europe.
Thus, the TIF representatives will participate in meetings and discussions with the purpose to learn about more about the CAB and duly inform the TIF Board of Directors during their upcoming meeting in April. Moreover, other ongoing European actions relating to haemoglobin disorders will be presented by Mr George Constantinou and Mr Angelo Loris Brunetta, esteemed TIF Board Members.
Upon a final decision by the TIF Board of Directors, the President of TIF’s European Member Associations will be invited to a CAB Information Meeting, where detailed information about the CAB, its governance, policies and its role will be provided. This information will then be shared with all members of the national associations ahead of the application period where all national thalassaemia associations, members of TIF and located in Europe will have the opportunity to apply for participation in the CAB. The application process will follow an open and transparent procedure, as detailed previously. TIF being an umbrella Federation by definition will be the body that will coordinate this initiative. It is notable to mention that TIF has already reserved budget and resources for undertaking the coordination of this CAB.
We look forward to working with you closely on this important initiative that will contribute to the improvement of the quality of life of patients in Europe and globally.