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Delegation visit to Germany – November 2018

It is estimated that more than 9 million of the immigrants now living in Germany come from countries considered to be of ‘risk’ for haemoglobinopathies.[1] Seeking to provide guidance and support to patients, and acting in the context of its EU project ‘THALassaemia in Action (THALIA)’, TIF delegated Dr. Michael Angastiniotis, Medical advisor, and Mr. George Constantinou, a distinguished TIF’s member, to visit Hamburg, Germany on November 19-20 , 2018.

During its visit, the delegation team visited the Hamburg University Hospital and, subsequently, had a meeting with patients representing the Board of the Seltene Anämien Deutschland And E.V (SAM) patient organization.

 

Main issues highlighted:

  • The rarity of the disorder leads to many physicians and health authorities having limited experience in thalassaemia.
  • In Germany patients are scattered, hence several local/regional associations have formed, maintaining however little contact with each other.
  • A registry for patients with thalassaemia was initiated in 2014, but is not yet fully populated.
  • Patients are scattered in many small hospital units and have difficulty accessing Reference Centres. Incoming migrants are increasing the number of patients, with little readjustment of services to deal with the growing needs.

 

Next steps to be taken:

  • Encourage the inclusion of the Hamburg University Hospital in becoming a TIF’s Collaborating Centre Network.
  • Raise healthcare professionals and patients’ awareness on thalassaemia and haemoglobin disorders, through:
  • the promotion of TIF’s Thal e-course for patients and eThalED course for healthcare professionals,
  • the provision of educational opportunities to patients (i.e. organization of a dedicated workshop), and
  • the improvement of access to national guidelines for the Clinical Management of Thalassaemia, amongst the HCP’s community
  • the advocacy for the usage of the thalassaemia electronic registry developed by TIF, and
  • work with local patient associations for the network development of German thalassaemia patient associations for exchange of knowledge, experiences, alleviating struggles of isolation and marginalization, in addition to widening effective advocacy opportunities.

[1] Kohne E, Kleihauer E. Haemoglobinopathies: A Longitudinal Study Over Four Decades. Deutsches Ärzteblatt International. 2010; 107(5):65-71