OIFE

Seasonal Greetings from OIFE

Dear friends & contacts of OIFE.

It’s Christmas Eve in Switzerland and I’m taking a moment before family dinner to look back on the year that has passed. To be honest it has been 12 months of ups and downs in the OIFE. To start with the saddest part, it has been a challenging and emotional time after the sudden passing of OIFE’s vice president Ida Mannistö from Finland in October. Ida had not been part of the Executive Committee (EC) of OIFE for more than a year, but she was a natural member of the team. We truly appreciate the time we got to work together. We will keep Ida in our thoughts in our future work for OIFE and she will be deeply missed…

Now to the more positive aspects. I think it’s fair to say that 2019 was the year of the many meetings. Winter and spring 2019 was a busy time preparing OIFE’s topical meeting See, Hear, Smile! that took place in Riga, Latvia from June 14-15th 2019. It was four years since our last topical meeting in Oslo, and every time we tend to forget how much work it involves to gather more than 80 participants from 22 countries. But thanks to our fantastic programme committee, the local organizers and our supporters Alexion, Mereo Biopharma, Cast Print and the OI Foundation we succeeded in creating an enjoyable and memorable event where eyes, ears and teeth and craniofacial issues were in focus.

See, Hear, Smile! brought excellent talks, great discussions and good opportunities for networking in a relaxed atmosphere. A big thank you to the lectures who came to Riga and contributed with their knowledge, with little or no compensation. On the following pages you can find material and photos from the event:

International networking at ICCBH

After the topical meeting we held our annual general meeting (AGM), where the Executive Committee of OIFE accounted for OIFE’s activities in the past year. Future plans and policies were discussed and members exhanged news and ideas. Dr. Eva Åstrøm from Sweden gave an update on ERN BOND and the company Mereo Biopharma gave us a status on the Asteroid study and presented opportunities and challenges regarding real world evidence and the need for registries. Click here to see photos from the AGM.

Shortly after Riga, Inger-Margrethe from NFOI and I went on to Salzburg for the ICCBH-conference. This year mostly to network with central professionals and people from the rare bone community. OIFE was also one of the central parties behind the establishment of the European Rare Bone Forum, which has taken a lot of time and energy in 2019.

In August we held our annual meeting of the Executive Committee in Oslo. We tried to do a low cost (or cosy) version through meeting in our private apartment. Since Dace was still breastfeeding, she brought her whole family. And even if it was slightly chaotic at times with computers, task lists, nappies and home made meals – we had a great time together and a fairly productive meeting.

OIFE Youth Event – chaos put into system (or a bus)

In September I had the pleasure to visit the annual family conference of the Brittle Bone Society, where I made new friendships and got a lot of useful information. But this is not the only conference or event where OIFE has been represented this year. Different representatives from OIFE have attended countless meetings in EURORDIS, ERN BOND, the European Medicinces Agency, in various research projects and much more. We’ve also had several meetings with the company Mereo Biopharma, where we have provided advice from the patient organization perspective. I’d like to take the opportunity to thank all the volunteers who represented us in the countless meetings and I send a big thank you to all our contacts and collaborators, for wanting to work with us in such a constructive way.

In October it was time for the highlight of the year – namely OIFE Youth Event. This year it took place in Bilbao, Spain. And as normal it was a success with a lot of tired and euphoric people going home with severe sleep deprivation and new friendships for life.

The last two months of the year had Quality of Life in focus. Many people from the OIFE and OI-community in general attended the Quality of Life 4 OI-conference from November 22nd – 25th in Amsterdam. Personally I had the honor to give one of the opening talks about the changing role of patients and OIFE hosted the deep dive session 5 on patient empowerment together with OIF, BBS and the other organizations.

Many people from OIFE contributed in various ways even if the biggest workload was definitely on Care4BrittleBones. We’d like to send a special thanks to Dagmar and her team for daring to take the leap and host such an inclusive conference that had never been done on such a scale before.

With the after-film from the biggest event in 2019, we wish you all a joyful, relaxing holiday season and a Happy New Year with good quality of life!

Kind greetings from Ingunn – OIFE president