OIFE Youth Event 2019

OIFE youth event 2019 was hosted by the Spanish OI Society AHUCE and saw 49 participants between the ages of 18 to 35 from all over Europe (10 different countries in total) come together for a variety of activities and socialising. Gareth Cumming from the UK attended the event and here is what he wrote:

Getting There
This was my first time visiting Bilbao and due to limited flights I had to fly the day before giving me the opportunity to scope out the city before the others arrived.

I was a bit apprehensive at first due to the fact that Bilbao is situated on a very mountainous area meaning that it was very hilly and difficult to get around by manual wheelchair. The weather also didn’t help as Bilbao is located in the very north of Spain and combined with the time of year meant that the first few days was torrential rain – worse than British weather!

Day One
On the first day of the youth event I arrived at the BBK Bilbao Good Hostel. It was chosen as it is a hostel which has been designed to cater for many disabled guests, and it was the perfect venue to cope with all 25 wheelchairs that attended. Due to everyone arriving at different times from different countries there was only time for socialising and getting to know each other through ice-breaker activities.

Day Two
The rain had eased off a little, so we all made our way to the city centre. To get there we had to get the metro train which was a short walk from the hostel and was fully accessible however it did involve going in several lifts which was only big enough for 2 wheelchairs at a time, so with 25 wheelchairs this did take a while! Once we all arrived in the city centre the rain was too heavy for the free city tour that was organised so this gave us all free time to explore the city’s shops and bars and sample the local Pintxos – the region’s version of Tapas, very tasty!! When we returned to the hostel the group collected for the first organised activity, a very in-depth talk about relationships.

Day Three
The sun had started to come out and we went on our next activity, a visit to the world famous Guggenheim Museum. To get there we all boarded a large wheelchair accessible coach – which again took forever to load 25 wheelchairs on and get strapped in. Once at the museum we split up in to 3 groups for a guided tour around the museum and talk about some of the museum’s most famous pieces of art. The works ranged from very traditional paintings from artists such as Van Gogh and Monet to a giant metal spider sculpture and a giant puppy made out of flowers. Once the museum visit was over most of us decided to make our own way back to the hostel as loading the bus took too long, so groups of us made our way to the metro station with several stops at the local bars to get some more Pintxos (Tapas) and Cervezas (beer), the evening was finished off by more “socialising” on the hostels roof balcony.

Day Four
The Spanish sun had finally come out to play so we all made our way to a nearby park where we all took part in the “Gymkana”; we all split up into teams and took part in team activities such as quizzes, riddles and physical challenges, ending with a picnic on the grass where it was warm enough to strip off and top up our tans. In the afternoon the majority of us went back into the city centre where we were able to go on the free city tour that had been rearranged from earlier in the week. We were able to take in the amazing views of the city and hear about its fascinating history. The evening culminated in the main party night where the organisers had reserved a local night club where we partied until the small hours. It may not have been wise to hold the main party on the last night as many people had early flights the next day and we all had to check out of the hotel by 10:30am!

The last day was just enough time for early morning goodbyes through teary eyes and painful hangovers, which was an encouraging sign that everyone thoroughly enjoyed the week and that it was really well arranged and executed by the organisers and their volunteer helpers. The whole trip was fantastic, even with the dodgy weather, and there was only one OI related injury. Unfortunately, being 35, this was the last year that I was young enough to qualify to attend, which is a shame as 2020 will be somewhere in Poland, therefore I would encourage anyone reading this with OI between the age of 18 – 35 to sign up as soon as it’s advertised.

Writter by Gareth Cummings, Trustee Brittle Bone Society


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






OIFE Youth Event – Registration is open!

The OIFE Youth event will take place between 23rd to 27th, October 2019 in Bilbao, Spain.

The goals of the OIFE Youth Event are:
– sharing experience & ideas across borders
– networking and getting to know young people with OI in other countries
– social activities and fun
– to create awareness about OIFE to young people in Europe

Target group: People with OI age 18-35 from European countries.

The deadline for registration is the 30th April. Click here to register!

Venue: BBK Bilbao Good Hostel –

Please send any questions you might have regarding registrations to e-mail:

See flashbacks from OIFE Youth Event 2018 here.



OIFE Youth Event 2018

By Lars Nesset Romundstad, Translation: Ingunn Westerheim

From October 25th to 28th 2018 Kristian and I traveled from Norway to Århus in Denmark to attend the annual OIFE Youth event. The traditional youth event took place in the Pindstrup Centre and was organized by the Danish girls Malene, Ninna, Matilde and Marie, who’s one of OIFE’s youth coordinators. The girls had put in a lot of effort to make the event as successful, nice and useful as possible. Actually they had planned the event for a whole year, from when we left the 2017 event in the Netherlands.

The 2018 event had people with OI between 16 and 35 years of age as a target group and welcomed as many as 42 participants from eight different nations: Norway, Sweden, Denmark, Germany, the Netherlands, Belgium, UK and Spain. The increase in number of participants was mostly due to a big delegation of 12 people from Spain, with Tamara from Ahuce as the coordinator. The Spanish participated with four people in 2017, which was their first OIFE Youth Event.

After being collected at Copenhagen and Aarhus airport, the accessible bus took us to to the Pindstrup Centre, which is a holiday centre adapted for disabled people. It has a bigger building in the middle and is surrounded by three houses, which can accommodate around fifty people in rooms for 2-5 people.

The first day was used for getting to know new people and relaxing, after what was for several rather strenuous travels. Some of the Spanish had been spending the night on Tamara’s couch in Madrid, due to long stopovers with Ryan Air both in Madrid, London and Copenhagen. Another adventurer was Qusai from the Netherlands who started with a delayed train in Amsterdam followed by a missing ramp in Hamburg. There Qusai and his powerchair had to be lifted out of the train by the local firesquad! This was followed by a four hours taxi trip to Århus, because all the trains had left for the night. Around half past 10 in the evening, most people had arrived though, and the long week-end could start.

Qusai rescue operation

The Danish girls had organized activities, with the goal that everyone should get to know each other irrespectable of nationalities and type of OI and they had been very creative in their programme planning. Speed-befriending, naked painting and baking with a set of special ingredients was only some of the many activities we tried during the first whole day. The baking ingredients could be won in contests consisting of liquorice eating, humming or beer pong

Day three we visited Århus city, where we got to spend time in ARoS art museum, the old town and the dome church. We finished of with a great meal at Jensen’s Steakhouse.

The last day we painted t-shirts, had a sit down aerobics class and a neon dance party in our newly painted t-shirts.

Both Kristian and I were very happy and content with this year’s youth event. International contacts and friendships were made and we exchanged ideas and experiences on how it’s like to live in different countries regarding healthcare, car support etc. The differences between the countries are huge.

The event was very amusing and something the participants will surely remember for a very long time. Everything was very well organized. Even con water pipe breaking causing us to be without water for 15 hours was handled. The girls mastered the logistics perfectly, especially considering that we were around twenty wheelchair users. The Danish organizers therefore deserve a great THANK YOU! I’m sure the way the OIFE Youth Event 2018 was organized, will inspire future organizers. We’re already looking forward to Bilbao in 2019.



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