Dear members of the international OI-community! 

In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be substantially less influenced by…Covid. Because of it, many of us are left in solitude on New Year’s Eve this year. Some of us are privileged to party with a close group of friends or family. But not that many are planning to visit huge parties this year either. We are saving big parties and international travel to 2022….we HOPE.

For the OIFE, 2021 was in general a good year with few but important, projects.
Here are some of the highlights:

WE MADE AN IMPACT TOGETHER!

Once again we would like to thank each and every one of you for making an effort with our biggest collaboration project in OIFE’s history – the IMPACT survey. Together we managed to gather more than 2200 responses from 66 countries and this has been noticed by many outside the OI-world. People and organizations are impressed by the power of the OI-community when we gather around one goal – big data. The data from Impact will give both us and researchers important knowledge and give us value for many years to come. The drawback of having this amount of data is that it takes time to both clean and analyze, so you will hear more from us when the first results are expected in 2022. Follow the resource page for news about the project.

WE WELCOMED NEW PEOPLE AND NEW MEMBERS

In 2021 we sad goodbye to some very important volunteers who had made a huge effort for OIFE through many years. We also welcomed some new ones to the team. In addition we welcomed two new member organizations – the Swedish OI-organization as ordinary members and the Chinese organization Zero one as associate members. Together we are stronger.

ACCESS TO TREATMENTS & SERVICES

In 2021 we have also worked a lot with “preparing the ground” for potential new treatments and services, a process that needs to continue in 2022 and further. We need to involve our member organizations much more on this project, because it doesn’t help that we have expertise and knowledge on regulatory processes and health technology assessments on a European level. We need it where the decisions about policy, politics and reimbursement are made – in each and every country. And the OIFE delegates and the national organizations will play an important role in this.

THE PAIN & OI PROJECT WAS REESTABLISHED

In 2021 we managed to gather a group of more than 20 professionals with interest and knowledge on the topic of OI and pain. The experts come from 11 different countries incl. US, Canada, Europe and Australia and represent a wide range of specialties.

In January 2022 the experts are going to take part in a brainstorming to see if we can establish a project with the goal of producing recommendations to improve pain treatment and pain management for people with OI.

NETWORKING, NETWORKING, NETWORKING

We didn’t attend a single face to face meeting in 2021, similar to many of you. However we did attend numerous events and meetings with both familiar stakeholders like EuRR-Bone, ERN BOND, EURORDIS etc and new stakeholders incl. several researchers and companies working with OI. Thanks to the effort of OIFE representatives, the OI Variant Database, hosted for many years on a volunteer basis by professor Dalgleish, got a new home in the Netherlands. Our voice was also heard in many other places, like the Rare Disease Week, Rare Bone Summit and the Rare2030 conference. Read more at oife.org and in the magazine.

MAGAZINES, CAMPAIGNS & A BLACK PEARL AWARD

We finalized four magazines in 2021. Well to be honest, the fourth magazine is still in its final phase and will be published in the beginning of January. In addition to highlighting the voices of researchers, clinicians, volunteers and artists with OI through the OIFE magazine, we also did 2 successful campaigns on social media, connected to Rare Disease Day and Wishbone Day. Please continue helping us in 2022, by sharing and liking our posts – if only to make them more visible. In 2021 we got some extra attention because of the Black Pearl Award. In 2022 however, we need to do the job ourselves, with your important help.

Remember OIFE is nothing without the OIFE delegates, volunteers and our organizations and their members – our local agents on the ground so to speak.

With a photo from a somewhat different celebration on Copacabana in 2012, I leave it here and with you a very happy New Year with lots of joy, excitement and new opportunities!

Kind greetings on behalf of the OIFE Executive Committee
Ingunn Westerheim
OIFE president