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Rare diseases conference Austria 2019

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Rare diseases conference Austria 2019

Report Rare diseases conference Austria 2019
Rare diseases

Silke and Alexander participated in the rare diseases conference in Austria (Salzburg) on behalf of our organisation on 8 and 9 November 2019.
On Saturday, the joint meeting began with registration at 8 a.m. At 9 a.m. we had the first meeting with lecturers on periodic fever syndromes and familial diffuse stomach cancer.
At 10 a.m. we participated in the second meeting about vascular malformations and classification and therapies for vascular disorders. This session was given by Dr. Peter Waldenberger (specialist in radiology and also doctor of our son, who has a vascular disorder). Then Dr. Waldenberger gave case presentations of the board for vascular disorders in the Landesklinik Salzburg. Then we heard about VASCERN and networking opportunities.

After a short break there were further meetings for rare eye diseases, rare neurological disorders, rare skeletal disorders and skull malformations.

After lunch there was a joint meeting about costs for orphan drugs and we got insights in European perspectives and Swiss perspectives and also the legal claim of patients for expensive therapies. At the end of the day it was possible to talk to all speakers.

At the end of this interesting day we made a long walk through the city of Salzburg.

On Sunday morning, the joint meeting began at 9 a.m., with the presentation of ELGA – the national e-health infrastructure. We got a lot of information about the practical benefit for patients.

We then gave a presentation about NAMSE (National Action Alliance for People with Rare Diseases in Germany) and about NAPSE (National Office for Rare Diseases) and heard a lot about EPAG (European advocacy for patients). At the end it was possible to talk to all speakers again.

Then we went home by train. We had great 2 and a half days in Salzburg and received a lot of information about rare diseases. We also met the doctor from the medical university in Vienna who will do genetic research at Niklas.

We are very grateful that we have been able to attend the congress.

RD Austria 2019

RD Austria 2019

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