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Bettina Ryll: It’s maybe a bit difficult to explain, considering we met over Melanoma- but to quote my daughter: ‘it is the family you choose’.
Sep 25, 2023, 16:58

Bettina Ryll: It’s maybe a bit difficult to explain, considering we met over Melanoma- but to quote my daughter: ‘it is the family you choose’.

Bettina Ryll, , shared a post by

“Violeta Astratinei and I are MPNEurope colleagues and special friends- it’s maybe a bit difficult to explain, considering we met over Melanoma- but to quote my daughter: ‘it is the family you choose’.
We are both rather opinionated and hate wasting our time on meaningless things. And we are also both scientifically trained- so participating in a European project as patient advocates was quite *the experience*.
In a nutshell, you fall from a setting where everyone will most carefully remember your latest academic achievement however minor and you have ample administrative support (obviously while complaining about overheads) to one where you have none of the latter and have to magic it in a few-person-show. As for the former, however much you work and contribute, you are relegated to ‘the patient voice’ or ‘the next of kin’. As for acknowledgement, let alone valid recognition- fight for it or forget it.
We are far from having it all figured out but join us for a discussion on how to survive the admin of European projects, dodge the bullet on the 2 for the price of 1 ‘patients doing our comms & diss’ and thoughts on commanding the recognition you would have gotten had you been anyone but a patient.”

Quoting on

“iToBoS is MPNEurope’s third European project. Listen to iToBoS (Intelligent Total Body Scanner for Early Detection of Melanoma) partners Violeta Astratinei and Bettina Ryll what they have learned from participating in these projects- and what they wished they had known when they started!
Wednesday, 27th September, 9-10am CET

So sign-up here and share the invite!
Find out more about the project here.
iToBoS (Intelligent Total Body Scanner for Early Detection of Melanoma)”

Source: Bettina Ryll/Linkedin and MPNEurope/LinkedIn