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






Report from Quality of Life 4 OI

OI is more than Fractures, Surgeries and Pain!

As a currently-elected family representative by our regional OI-association comprising the states of Hessen, Saarland and Rheinland-Pfalz (Germany)-, I was honored to take part in the highly-anticipated conference ‘QUALITY OF LIFE 4 OI’ this year. The conference took place in Amsterdam from the 22nd-25th November 2019.

This conference was expected to gather the scientific, research, medical and many proactive individuals with OI themselves or others representing ‘the patient’ side, which in my view it certainly was successful at. The topics covered at the conference were diverse and encompassing the latest research from clinical trials involving young OIers, such as Stem-cell Injections as a treatment option, to the most efficient medical care structures for patients with OI at a global stage coming from Canada and Hong Kong.

There will be many reports coming from different attendees at the conference from our German side. Therefore, I would like to narrow my reporting to the themes of the conference that stood out to me personally. I would not be mistaken to say that it was probably the first time ever that a conference of this scale managed to shed light on one of the most untapped subjects of all, the psychosocial aspects of OI. As we all know, OI comes in all shapes and sizes, its diversity has posed tremendous challenges to medical teams all over the world for years. Increasingly though, as doctors and surgeons thought they got a grip on how to diagnose, how to manage fractures, how to straighten bones and maybe even how to manage pain. Once again, they found themselves challenged and faced with issues that could interfere with the results, they would expect from the medical and therapeutic treatments provided to their patients.

The psychosocial consequences of OI are indeed diverse and very common. These psychological barriers are also very independent of the type of OI and the age of the person with OI. They range from the sense of isolation as fractures and hospital-stays reoccur more often than wanted to depression, self-esteem and confidence issues and not to forget the extreme lingering fatigue that interferes with the daily activities and performance of children and adults alike.

There was one workshop titled ‘Psychosocial Aspects of OI’ led by wonderful speakers: Kara Ayers (USA), Claire Hill (UK) and Ute Wallentin (Germany). The workshop allowed for discussions to take place around the topics of Fatigue, mental health and pain management. Different Coping tools and mechanisms were also suggested. In addition, there was a wonderful exchange of knowledge and ideas between the speakers and the audience which allowed for the OIers to voice of what mattered to them and had a say as to what was important and what was not. Though it seemed that we are still right at the beginning, we definitely should not let that discourage the efforts and the meaningful work that has been done so far to tackle these issues individually. All with this in mind, it becomes evident that it is an urgent matter to include a well-structured psychological support as a vital and essential part of any OI- treatment starting, preferably, in early childhood. Subsequently, there is an urgent need to improve early screening methods and treatment options to overcome the psychosocial problems for sure.

To sum it all up, I was extremely impressed and glad to see the active involvement of empowered young and adult OIers who are taking the reins of their care and lives to personally direct OI-specific research with the aim to better the quality of their community in the context of the individuals’ varied perceptions. With that I would call on the conference organizers for a follow-up in few years to see what has become of all the studies presented.

Written by Meriem Ben Jelloun, DOIG 


Marie’s Youth Corner

Impressions from the “QualityofLife4OI” Conference

I attended the QualityofLife4OI conference in Amsterdam last month. I wasn’t sure if it was a good idea to go, because I had to move apartment two days after the conference. Luckily I decided to go and it was such an amazing trip and I managed to pack my apartment down afterward so I was ready to move.

It was so good to see all the people I already knew but also to meet a lot of new faces. I got new friends at the conference and that is what I love the most about having a disability that you get friends from all over the world. Hopefully next year we will all meet in Poland where the next OIFE youth event will take place. It is going to be so much fun!

At the conference there were so many interesting workshops and speeches. It was just so cool to see how many people who are passionate about improving Quality of life for people with OI in one or another way. At Saturday there were 5 different workshops and you had to choose one of them and it was so difficult to choose because they all sounded so relevant. I decided to hear more about medical treatments and it was very interesting to hear about. We have already come a long way in treatments but just to know that we are constantly getting better and finding new ways to help people with OI is so cool.

The picture shows Stephanie and me from the last night at the conference where there was a dinner party. There were different performances and a guy named Sparsh was up singing. He was so good at singing and it was a perfect ending on a good conference. Below you can find a video of the Eminem cover he did in Amsterdam.


The Voice of People with OI

Do you want help us establish the voice of people with OI?

OI Community Sounding Board

The organizers of the conference Quality of Life 4 OI in Amsterdam are assembling an OI Community Sounding board (webinar) to test the key messages from the OI community, which will be shared during the Amsterdam conference. This is a “once off” initiative related to the Conference Quality of Life 4 OI. The duration of the webinar will be 90 minutes.

Who can take part?

People with OI and parents of children with OI from all countries are invited to take part in the webinar as long as they can communicate in English. Professionals may join, although they will not be able to vote. You don’t have to be a participant in the conference to join. All you need is a genuine interest in moving healthcare and research for OI forward.

When will the webinar take place?

Saturday, 19 October 2019 at 15 CET (for example Amsterdam), 9 EST (for example Washington), 21 CST (for example Beijing).

How to join?

Registration upfront is required: REGISTER HERE


Patient Outcomes

Many people & projects are talking about patient outcomes & outcome measures these days. Today at the #iccbh2019 there was a poster presentation from Australia which reported that 1782 different outcome measures were used in 19 different trials about OI. This big variety makes it challenging to compare research across borders and between projects.

We need standards & guidelines. Come to Amsterdam in November and help us develop some recommendations on this! Dr. Frank Rauch (photo) is the programme chair of the Quality of Life 4 OI-conference and will be there together with many others experts in the field, like Antonella Forlino (photo).

Register at: www.qualityoflife4oi.org

Translate »