Why does this year’s World Orphan Drug Congress in the province of Barcelona still feel so special?
- I DID NOT represent my former employer, the Federal Joint Committee (G-BA) in Germany.
- I DID NOT present any update on the G-BA benefit assessment of orphan drugs under AMNOG.
- I DID enjoy nice conversations with people involved in various rare disease areas.
- I DID meet wonderful people and feel sad when saying goodbye to them.
People may benefit from attending an event. An event undoubtedly benefits from the people who attend.
Dear old and new faces, thank you very much for sharing these special moments with me!
Sunset in Sitges, Spain
Background
My first attendance at the World Orphan Drug Congress was in Brussels in 2014. I presented a paper with the title ‘Assessment of orphan drugs by the Federal Joint Committee (G-BA) in Germany’. This session was an opportunity to show the latest developments in the G-BA benefit assessment of orphan drugs according to AMNOG. Moreover, the challenges due to limitated evidence were discussed, such as no comparator, small number of patients and lack of patient-relevant endpoints.
The motivation of the participants was overwhelming. I admired especially their intensity and persistence. Thus I decided to continue to present at this event.
My last involvement in the programme of this event was in 2019. Then I became fully involved with MBM Future Health as a G-BA Expert and was not anymore a G-BA Officer specialised in Orphan Drugs.
Click on the following link to read my story with rare diseases: Showing my stripes for this year’s Rare Disease Day