The Nordic Fabry patient organisations joined their forces and organised a Nordic patient meeting in sunny Copenhagen in early May.
This was only the second time in history that the Nordic patients had a chance to come together face-to-face so the event was long overdue. The meeting gathered around 40 participants from all five Nordic countries: Denmark, Finland, Norway, Sweden and Iceland. It was organised with the joint support of three pharmaceutical companies: Amicus Therapeutics, Chiesi Pharma and Sanofi.
The main themes of the meeting were Treating Fabry disease in the Nordic countries for 20 years and Differences and similarities in monitoring and treatment between different countries. There were two invited keynote speakers who shared insights into their long careers treating Fabry patients: professor Ulla Feldt-Rasmussen from Denmark and professor Ilkka Kantola from Finland. Other presentation topics from specialists included e.g. Fabry and lung symptoms, Fabry and pain and Fabry and children.
Several workshops were arranged for the participants to share their experiences and discuss their views on topics such as mental wellbeing as well as sleep and energy. Two Fabry specialist nurses, Susanne Walls from Finland and Lone M. Storkfelt from Denmark, held a popular workshop on the differences in monitoring the disease in different countries.
One of the biggest take home messages from the meeting was perhaps that despite the similarities between Nordic countries as far as size and welfare systems go, there were still quite many differences to be found regarding monitoring and treatment of Fabry disease and rare diseases in general. There was also a mutual wish expressed for continued co-operation between the patient organisations and even plans for joint projects in the future. Iceland does not have a patient organisation yet in spite of many diagnosed patients so the other country organisations were hoping for that to change and for the Icelandic patients to be able to participate in future meetings as well.
The general ambiance of the meeting was like attending a lively family reunion. There were many interesting discussions also outside the official program during meals and coffee breaks in all possible Nordic languages as well as in English. During the 2-day meeting we also managed to fit in a birthday celebration and have an eventful visit from our “in-house magician”.
Anna Meriluoto, chair of the Finnish Fabry Association gives a warm thank you to all the Nordic patient organisations for their joint effort in helping to organise this meeting. And a special heartfelt thank you to her Danish chairperson colleague, Irene Lauridsen, for her tireless contribution in helping to make this meeting a reality. Looking at the participant feedback all in all it proved to be a very successful meeting. Here´s hoping for many more in the future.
