A virtual TIF Delegation visit with stakeholders from Germany took place on 4 September 2020. The Delegation Team consisted of Dr Michael Angastiniotis (TIF Medical Advisor) and Mr Rawad Merhi (TIF Countries Officer). The Delegation was accompanied by Mr Kostas Tsurlis (Vice-President of SAM Deutschland e.V. AM – TIF Member Association; TIF Patient Advocacy Group Member).
The Delegation Team during the virtual meeting had the opportunity to meet with approximately 55 patients, parents and treating physicians from Germany. The agenda of the meeting focused on Gene Therapy with Dr Regine Grosse (Haematologist, Germany) providing an overview of the latest developments. Moreover, partners from Austria, Dr Eva-Maria Knoll (a Medical Anthropologist & passionate volunteer working with TIF in Austria) and Prof. Christian Sillaber (Haematologist, Vienna) also participated in the discussion.
During the meeting, the TIF Delegation Team had the opportunity to further cultivate the environment for the establishment of a national network in Germany (see THALIA2019 Periodic Report) as a result of the closer collaboration with SAM Deutschland e.V. AM and their representative to TIF, Mr Kostas Tsurlis.since the alignment meeting of January 31st, 2020.
The increased challenges faced by patients in Germany due to the COVID-19 pandemic have contributed to a strengthened relationship with TIF, who has provided unwavering and regular support and guidance in these trying times, engaging an increasing number of patients from Germany in activities (v.. Thal e-course, translation of COVID-19 materials, surveys for quality of life and gene therapy, webinars, thalassaemia patient advocacy group etc).