ePAG story: Stay safe on holiday with a European network


Jette Kristensen, President of Addison Foreningen Danmark (Danish Addison Patient Association) and Endo-ERN ePAG was kind enough to share this example of European cooperation, which showcases the power of patient networks.


Travelling abroad – and then finding out you’ve forgotten your medication. It’s a nightmare scenario for any Addison’s patient.

But that’s exactly the situation Holger, one of our members, found himself in when he went on holiday to Italy in August this year: he had forgotten his Florinef. He posted a message in our Facebook group asking if anyone else had experienced the same thing and if so, what they had done. And he did get some good pieces of advice such as taking extra hydrocortisone, eating salt tablets, etc.

I found that this might not be quite satisfying and thought that our European network might be able to help here, so I contacted my colleague Antonella, president of the Italian Patient Association. She checked whether Florinef could be obtained at some pharmacy but had to report back that it was impossible. The only option might be the Vatican pharmacy, because it is international. However, if she was told where in Italy he was staying, she could enquire at the local hospital and perhaps ask around among their members. Unfortunately, again, no luck. As it was in the middle of August, the big Italian holiday season, it was difficult to get in touch with anyone in the first place.

But shortly after this discouraging message, Antonella wrote that she had just been contacted by one of their members, Fabiana, who was willing to help Holger with Florinef from her own stock, and she could even speak English. All Holger had to do was call her, and I was given her phone number. Holger called her and got an appointment with Fabiana the next day in Florence. At the end of the day, Holger contacted me and told that he had had a nice meeting with Fabiana, had got a handful of Florinef and agreed with her that she should definitely visit him if she ever came to Denmark.

Holger was happy and not least his wife was relieved that they didn’t have to worry about the medicine anymore and could now enjoy Italy and their holiday to the fullest.

That’s what you could call a sunshine story and a great example of good European co-operation and networking.

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