Data strategy for the ERNs

EuRR-Bone is launched!

The registry EuRR-Bone was launched this week, and 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.

OIFE attended EURORDIS webinar on data strategy for the ERNs

Having more knowledge on registries and data sharing is therefore very important for the OIFE these days. Today we were represented at a webinar called “A data strategy for the European Reference Networks” (ERNs), which included the following talks:

  • EURORDIS proposals to develop a data strategy for ERNs
  • The European Health Data Space
  • ERNs data needs, progress until today and challenges around registries, data collection and data sharing across ERNs.
  • The perspective of ERNs hospital managers on data needs, opportunities and challenges.

EURORDIS publication on data strategy

The webinar was connected to a new publication from EURORDIS called “No time to lose: Building a data strategy for the European Reference Networks“. The aim of the publication is to inform the debate on a data strategy for the ERNs. The paper outlines EURORDIS’ proposal to co-create a comprehensive ERN data strategy that matches the ambition of the Networks, enabling them to address some of the most pressing public health needs of people living with a rare disease or complex condition.

The ERNs represent a unique opportunity for the innovative use of health data across borders to improve the lives of people living with a rare disease. At the same time, the large majority of people living with a rare disease are willing to share their health data to advance care and research, as long as this is done in a secure manner and they remain in control of the data sharing process. An integral data strategy should therefore be one of the building blocks of an ERN structure that aims to improve the life of people living with a rare disease through knowledge and data sharing across countries and diseases.

See also this useful glossary to understand more about data sharing and patient data.




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:



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.





COVID-19 – info for people with OI

The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page

Are people with OI in the risk group? 

We have received some questions if people with OI are in the risk group regarding the Corona virus (COVID-19). OI does not affect the immune system as such! However lung connective tissue is altered in all types of OI. The severity of symptoms and the risk for pulmonary problems is increased in people with short stature, abnormal chest shape, kyphoscoliosis, and vertebral or rib fractures.

In some countries they have specifically put osteogenesis imperfecta on the official list of “at-risk patients”. See the “Clinical guide for the management of rheumatology patients during the coronavirus pandemic” as an example from the UK.

See also “A message from the OI Foundation about Coronavirus”.

Resources on pulmonary issues & OI 

Fact sheets from the OI Foundation about:
– Respiratory issues:
– Adults with OI & breathing issues:
– Pneumonia vaccine for people with OI (new update from April 2020):

General emergency information for people with OI 

Official sources of information about COVID-19

With the fast-evolving situation surrounding COVID-19 in Europe and across the world, members of the rare disease community may be concerned about their health. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities/ ministries.

ERN-BOND COVID-19 Helpline 

ERN BOND – European Reference Network on Rare Bone Diseases has created a 24-hour Help Line for COVID-19. The purpose behind it is to give advice in cases where a person with a rare bone disease (incl. OI) has contracted COVID-19 or there is a strong suspicion that they have it.

The Help Line was created in agreement with the rare disease umbrella in Italy Federazione delle Associazioni di Persone con Malattie Rare d’Italia (UNIAMO FIRM) and with the Asitoi – Associazione Italiana Osteogenesi Imperfetta Onlus.

You can contact the Help Line by calling or sending a whatsapp message to the number: (+39) 331 1728796

For now, the network is primarily for Italy (the country in which the emergency is most acute), but ERN BOND is encouraging similar helplines in other countries.

Webinars on COVID-19 & OI on YouTube

There has been several webinars on COVID-19 & OI in the past weeks and months. We bring you the links to the English language

If you are in doubt with what you should do in the current situation – please contact the health care providers in your country!



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






Can you help us create good registries?

Why do we need registries for OI?

Several new drugs are being investigated for OI at the moment. If some of these end up on the market, it will be important to develop registries to monitor potential side effects and long term effects of these drugs. Registries are also important when it comes to learning about what happens when people with OI get older (natural history). More knowledge can also help us create standardized guidelines and provide better treatment for both children and adults with OI.

Who are working on registries for OI?

Several different stakeholders are working on developing new and coordinating existing registries for OI and rare bone disorders at the moment. The European Reference Network for Rare Bone Disorders (ERN BOND) is one of them. OIFE is helping out by gathering information and giving advice to the different stakeholders.

ERN Bond group photo
ERN-BOND is a European network of hospitals & experts in OI and other rare bone diseases.

We need your help!

ERN BOND has created a survey to provide a picture of the current situation in Europe in regard to registries for OI and other rare bone diseases. The survey is for patients with OI and other rare bone diseases and parents of children with OI and other rare bone diseases. It’s available in the following languages and will be open until September 30th 2019:

The survey will take around 10-15 minutes to fill out and the goal is to uncover what people with OI and other rare bone diseases would want to get out of providing data to a registry and/or joining a research study.

Who can provide input?

To make sure that the survey will be valuable for our advocacy work, we need as many people as possible to answer! People from all countries can provide input as long as you can read and understand one of the nine languages available. Please indicate in the form which country you are from, to make it easier for ERN BOND to interpret the results.

Mereo Biopharma is developing a new drug for OI (setrusumab). If the drug gets on the market, the EMA will probably tell the company to collect data from people with OI to monitor long term effects.

Keeping medicines safe

In order to monitor if a medicine is safe, the European Medicines Agency (EMA) is dependent on input from patients, general practitioners, hospitals, pharma companies as well as knowledge from registries. Learn more in the video below.



We need the UK in ERN BOND

OIFE is supporting the Genetic Alliance UK’s ProtectERNs campaign that calls on the UK government and the EU to secure the sustained involvement of the UK in European Reference Networks (ERNs) post Brexit. This is especially important for the network for rare bone disorders (ERN BOND), because they have a substantial number of UK healthcare providers actively involved in the network.

ERNs connect patients, clinicians and researchers, allowing knowledge and expertise on rare diseases to be shared across Europe and in turn provide patients with access to diagnosis and transformative care without the burden of long-distance travel.

Support the campaign by signing up here:

In the photo you can see two of the patient representatives in ERN BOND – Rebecca from Norway and Inês from Portugal.



The See, Hear, Smile conference was followed by OIFE’s Annual General Meeting (AGM) from June 15th – 16th in Riga, Latvia. In addition to the business part of the meeting, we also shared good examples between our member organizations. Dr. Eva Åstrøm from Sweden gave an update on ERN BOND and the company Mereo Biopharma gave us a status on the Asteroid trial and presented opportunities and challenges regarding real world evidence and the need for registries.

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