Dr. Richard E. Kruse from Wilmington, US recently published a new book on surgery in OI. OIFE was one of the consultants in the writing of the book, to secure that the voices of people with OI were represented.

The book will help guide decision-making in surgery using biologic and surgical principles to assist the planning and execution of surgery with available resources. It will then provide the surgeon with background knowledge of the genetic, medical and surgical principles necessary to formulate a comprehensive treatment plan, illustrated by varied and complex patient cases from experienced surgeons and clinicians worldwide. Beginning with an introduction to osteogenesis imperfecta and the general care of the patient, the book is divided into thematic sections covering general surgical considerations, principles of extremity surgery, and surgical cases on the pelvis, upper and lower extremities, and the spine, it will incorporate aspects of surgical decision-making, including cultural and geographic factors, to give a truly global perspective on the care of these complex patients.

You can purchase the book here.



Today was the official launch & kickoff of the the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone), which is funded by the European Union’s Health Programme. OIFE was represented by Rebecca Tvedt Skarberg (ERN BOND ePAG).

EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI in collaboration with the EuRRECa project (European Registries for Rare Endocrine Conditions).

EuRR-Bone will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care of people with rare bone and mineral conditions.

EuRR-Bone will be one of the main topics on the agenda on the 2nd meeting of OIFE’s Medical Advisory Board (MAB) on June 19th.

Read more about EuRR-Bone here:


OIFE Youth Night

Saturday 13th of June 2020 there will be an informal chat session for people with OI (age 18-35) & friends from all over the world on Zoom! You don’t want to miss this. Will you join us?

Questions? Send an email to

Register here before Saturday:



Check out the TeleECHO series on rare bone diseases, which is a mix of lectures and case discussions. Previous sessions can be watched online, including:
– Genetic Testing in the Diagnosis of Rare Bone Disease
– OI Dominant vs Recessive: Impact on Treatment
– Non-Accidental Trauma

Link to the TeleECHO page of the OI Foundation here:

The OI Foundation is considering to create a specific TeleECHO series about osteogenesis imperfecta (OI) during the autumn of 2020, where professionals from both US, Europe and other parts of the world will be invited to contribute and attend. Please contact if you have questions on this.



OIFE at MEDEV-MOCA-meeting

Taco van Welzenis represented OIFE at the videoconference in the MEDEV-MOCA-meeting which took place on May 26th. The setrusumab project of Mereo Biopharma was the topic (Mereo Biopharma). BPS-804 (setrusumab) is a fully human monoclonal antibody designed to inhibit sclerostin, thereby improving bone strength and therefore reduce fractures in patients with OI. It has been tested in adults with OI, and a bigger trial to test the drug in children in a number of countries is in the planning phase.

MoCA provides a mechanism for European countries to collaborate on coordinated access to orphan medicines in a voluntary, dialogue-based approach, intended to create a fluid set of interactions between key stakeholders, across all aspects of a product.

MEDEV stands for Medicine Evaluation Committee and represents an informal cooperation between 22 national authorities from 18 Member States and Switzerland responsible for the assessment, pricing and reimbursement of medicines in Europe. MEDEV members include national HTA agencies and social health insurers (payers).




On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500 people from 57 countries registered for the conference, which is recognized globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

The conference was divided into 6 themes and we tried to spread out, so we had people from OIFE attending all themes:

  • Theme 1 – The future of diagnosis: new hopes, promises and challenges
  • Theme 2 – Our values, our rights, our future: shifting paradigms towards inclusion
  • Theme 3 – Share, Care, Cure: Transforming care for rare diseases by 2030
  • Theme 4 – When therapies meet the needs: enabling a patient-centric approach to therapeutic development
  • Theme 5 – Achieving the triple A’s by 2030: Accessible, Available and Affordable Treatments for people living with a rare disease
  • Theme 6 – The digital health revolution: hype vs. reality


OIFE was also well represented among the speakers. Rebecca Tvedt Skarberg, who is also an ePAG in ERN BOND, gave one of the opening talks about future scenarios for rare diseases connected to the Rare2030 project, which got a lot of positive feedback. She also contributed as a speaker in two of the sessions later in the program. See another post about the Rare2030 scenarios.

One of the other opening speakers besides Rebecca were David Lega, who is a member of the EU Parliament, living with a rare condition himself.
See his opening talk through this link.

All 29 ECRD sessions are available on demand for you to access via the same online platform for one year after the conference! If you didn’t already register for ECRD, you can register now at new preferential rates to access all session recordings.





RARE 2030 Scenarios

Rebecca Tvedt SkarbergThe Rare2030 – Foresight in Rare Disease Policy is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe.

Rare2030 is a two year project that will end in a presentation to the EU parliament at the end of 2020 with recommendations on the most critical areas needing sound policy.

Rebecca T. Skarberg from OIFE and ERN BOND has been part of the expert panel of Rare2030 and gave several talks about the topic at the ECRD-conference which took place online on May 14th and 15th. It’s still possible to buy ticket to the conference, where you can see all the sessions and download the posters for 365 days after the conference.

With the information collected and trends identified the Panel of Experts has put together four possible future scenarios depicting what the world may be like for people living with a rare disease in 2030. These policy scenarios have been illustrated in this new video. We recommend you all to check it out!



Perhaps not a big surprise, but the OIFE Executive Committee has in collaboration with the local organizers decided to cancel the OIFE Youth Event 2020 that was supposed to take place end of August, because of the Corona virus situation. Our plan is to do the OIFE Youth Event in Poland i 2021 and in Belgium in 2022. We will keep you updated!

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