Aiming at the continuous training of patients on issues relevant to the management of thalassaemia and other haemoglobinopathies, as well as the improvement of existing conditions and services provided for the support and care of patients with such diseases in Europe, TIF organized a multidisciplinary Capacity Building Workshop aimed at both patients organizations and individuals with thalassaemia, in Hamburg, Germany, from 12 to 13 October 2019.
TIF’s highly productive workshop entitled ”Capacity, Competence & Confidence: Building the three CS for patients’ organizations”, was attended by over 120 patient organizations’ representatives and patients from 12 European countries, including Cyprus, Greece, Germany, France, Italy, England, Austria, Ireland and Sweden. Actively involved in the workshop’s sessions were also several participants from America, Canada, India, Iran, Saudi Arabia and Turkey.
Through a rich and carefully tailored training program, thalassaemia patients’ representatives had the opportunity to obtain the necessary knowledge and skills, in order to become capable of collaborating with decision-makers in their respective countries, carry out well-organized and constructive actions to control and manage the disease, and protect their rights. The workshop also enabled thalassaemia patients to acquaint, discuss and share common concerns to better meet the challenges they face on a daily basis.
In particular, issues such as the importance and role of patient associations for effectively claiming multidisciplinary quality care services, new developments in thalassaemia treatment and existing challenges, the necessary tools and methods for communicating and collaborating, and lots of other topics were presented and analyzed.
The multidisciplinary training workshop was organized and carried out in the framework of the European co-financed Program of Activities entitled ‘THALassaemia In Action’ (THALIA) and implemented by TIF for the period 2018-2021.Full Programme (EN)/(DE) Keynote Presentation_ ”The role of patient associations” Presentation_”Ensuring the patients’ voice is heard” Presentation_ ”Building robust infrastructure for patient-oriented NGO’s” Presentation_ ”Patient Rights: Implementation & Contribution to the quality of healthcare services Presentation_ ”Participating in clinical trials”