Delegation Visit to Austria – 11-13 April 2019

TIF’s Board of Directors Member and Expert Patient, Mr. George Constantinou, and TIF’s collaborators Dr. Eva-Maria Knoll and Dr. Anne Yardumian, were delegated to visit Austria on 11-13 April, 2019, a country of special focus for the THALIA project, due to the fact that it has become a major transit route for migrants seeking to claim asylum in Germany.

TIF’s delegates visited:

• the Department of Haematology & Hemostaseology, Vienna General Hospital,
• the St. Anna’s Children’s Hospital,
• the Department of Haematology and Oncology, Hanusch Hospital.

In addition, they attended the Patient Forum meeting of the International Liver Congress and held individual meetings with haematologists and paediciatricians, actively working in the field of thalassaemia.

Some of the major issues underlined throughout the aforementioned visits and meetings were:

• albeit overally treated in a sufficient way, patients with thalassaemia presented in some cases limited adherence to blood transfusions and iron chelation treatment,
• strengthening of genetic counselling and psychosocial support provided to patients is necessary,
• language barriers were prominent as well, making communication between doctors and patients rather intricate,
• patients stated to often feel isolated and marginalized, due to the lack of patient support groups.

Steps to be taken onwards in the country include to promote a national registry with epidemiological and clinical data on the thalassaemia population, distribute guidelines and educational material developed by TIF to both attending physicians and patients with thalassaemia and sickle cell disease, further foster patients’ collaboration and self-determination, through supporting the establishment of a thalassaemia-dedicated group, and achieve enhanced knowledge about the disease’s management, as a result of the patients and doctors’ participation in the forthcoming Capacity Building Workshop and Educational Course to be organized by TIF next October and November 2019, respectively.

THALASSAEMIA & SICKLE CELL FORUM – THALSIFO AUSTRIA

The establishment of the Thalassaemia & Sickle Cell Forum (THALSIFO) Austria, as a result of the delegation visits in 2018 and 2019, has finally become true!

The first meeting of THALSIFO took place on 17 May 2019, with 16 attendees (patients, parents and family members of thalassaemia and sickle cell disease patients).

It is noted that this is the first meeting of this kind to take place in Austria of the haemoglobinopathy community. As established during both TIF Delegation Visits patients do not know each other and feel isolated and alone. The organisation of this meeting and Forum has gone a long way to combat this marginalisation and has contributed to the exchange of experiences with peers. Not a single of the participating patients had contacts with other patients before this meeting!

The meeting also has demonstrated the heterogeneity of Austrian patients, both in terms of ethnicity and cultural background, but also linguistically (the majority of attendees spoke only German, 5 spoke only English, a few spoke English and German).

The initiative for the organisation of the meeting was undertaken by local collaborator Dr Eva Knoll (Medical Anthropologist) and was attended by Prof. Christian Sillaber (Haematologist; Dept Haematology & Hemostaseology, Vienna General Hospital).

More meetings have been scheduled to bring together the patient community.