Osteogenesis Imperfecta Federation Europe

02/11/2026

OIFE AT THE WORLD ORPHAN DRUG CONGRESS EUROPE 2026
From October 26-28, the OIFE was represented by our advisory board member and researcher Lidiia Zhytnik at the World Orphan Drug Congress Europe 2026 in Amsterdam.

The congress is one of Europe’s largest meetings on rare conditions. Researchers, regulators, industry representatives, health technology assessment experts and patient organisations came together to discuss a shared challenge: How can we get therapies to people with rare diseases faster? We went to listen, learn and bring the voice of OI into the conversation — and returned with fresh ideas and plenty to reflect on.

See the full program of the 2026 congress here:
https://www.terrapinn.com/conference/world-orphan-drug-congress/agenda.stm

29/10/2026

ISOQOL 2026 - THE VALUE OF PATIENT EXPERIENCE DATA
With increasing emphasis on the value and importance of the patient’s voice in drug development, the final plenary session at the International Society for Quality of Life Research (ISOQOL) 2026 conference gave an overview of the topic of patient experience data from both regulator and patient perspectives.

The session which was moderated by ISOQOL president-elect Kevin Weinfurt, included three keynote talks followed by Q&A and discussion:

* Patient-Focused Drug Development (Robyn Bent - FDA)
* From Patient to Payer: Maximising the value of PED for Payer Decision Making (Lynda Doward - RTI Health Solutions)
* Who are the patients and which role can they play in drug development and regulatory affairs? (Ingunn Westerheim - OIFE)

Ingunn's message was that before you start involving patients, you need to define what kind of process you are in and what kind of input you need. Do you need a person without any background knowledge or do you need a patient representative with a collective voice or even a patient expert?

She also stressed that in order to succeed - drug developers not only need to consult with patient groups and patients - they need to involve them early and frequently throughout the whole drug development process. A plan should also be made for what kind of patient experience data will be needed in regulatory affairs and reimbursement decisions.

She also presented the dilemmas that rare disease groups are struggling with and presented some wishes for the future. Again it depends on who you ask. Parents often look for a cure, but the adults want treatments that alleviates their most bothersome health problems. And the children? They just want to fit in, have friends and go to school as all other children.

28/10/2026

TWO WEEKS LEFT TO SIGN UP FOR OIFE INVESTIGATOR MEETING 2026!
Researchers and clinicians working on Osteogenesis Imperfecta (OI) are invited to register for the OIFE online Investigator Meeting 2026, taking place on Zoom on 13 November 2026 from 2 - 7 pm CET (8am - 1pm EST):
https://us02web.zoom.us/meeting/register/QJjYVA7cQIy_-g9kHSJKqQ #/

The meeting is not adapted for a lay audience, but people with OI who are interested in research can also sign up to attend.

This annual global online meeting provides a unique opportunity to learn about and discuss the latest advances in OI research with an international community of experts in a collaborative and informal setting. In 2025 we had more than 350 who signed up from 55 countries. Around 220 people took part, and the majority were clinical and basic researchers.

In addition to 8 talks based on abstracts from basic and clinical research, there are two main topics this year:
- Variability and complexity in OI
- Bone quality vs. bone density - how do we measure what is relevant for both patients, clinicians and regulators?

Learn more about meeting and program details here:
https://oife.org/what-we-do/events/oife-investigator-meeting-2026/

27/10/2026

WHAT WOULD A MEANINGFUL OI TREATMENT DO FOR YOU?
Together the Osteogenesis Imperfecta Foundation (OIF) and Osteogenesis Imperfecta Federation Europe (OIFE) want to make sure those working to develop and approve new treatments understand what matters most to people with OI and their families, and what meaningful improvement looks like to them.

Most of the therapies for OI under development today are mostly looking to reduce fractures. But what are the most important things YOU would want a new and potential OI drug treatment to do? We have developed a short survey to learn about your priorities: https://tinyurl.com/OItreatmentsurvey

The survey is open to:

* Adults living with OI, from ANY country
* Parents or caregivers of a child with OI, from ANY country

You do not need to be taking an OI medication or have experience with a specific treatment to participate. The survey is available in English only and should take maximum 5 minutes to complete.

Please complete the survey by November 13, 2026.

26/10/2026

SCIENCE FICTION SHORT FILM ABOUT OI FROM KOREA
In the interview with our new member organization in Korea, you could read that the organization had started a smartphone film academy as a project for their members.

Five members with OI, together with their families and volunteers, have created a 10-minute short film which is now participating for the Online Audience Award in the Korea Parallel Smartphone Film Festival (KPSFF).

The film is based on a scenario about OI, and tackles issues like invisible vs. visible OI, discrimination, inclusion etc and you can watch it here: https://www.youtube.com/watch?v=fpsF7RK4AVY

To watch it with English subtitles - please turn on auto captioning and choose translation to English (on top of the embedded Korean subtitles).

Help the Korean OI-organization create awareness on OI by watching the short film and adding your comments.

23/10/2026

OIFE AT ISOQOL 2026 IN PRAGUE
The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

This year they hosted their annual meeting in Prague from October 18-21. OIFE’s president Ingunn Westerheim was invited as one of the keynote speakers to give a plenary talk about how patient experience data can be collected and used in the drug development process and in regulatory affairs.

Thank you to this year’s program chairs Elizabeth Gibbons and Kate Absolom for including the patient voice on the center stage. Nothing about us without us!

23/10/2026

INTERNATIONAL XLH DAY
Did you know that X-linked hypophosphatemia (XLH) is one of the rare conditions that has most similarities with OI?

This includes fractures and surgeries as a child, dental problems, hearing issues as well as pain and fatigue.

Today October 23 is XLH Awareness Day. Join us and the The International XLH Alliance in raising awareness about XHL.

💙 October 23 – International XLH Awareness Day 💙

X-linked hypophosphatemia (XLH) is a rare disease that poses daily challenges for those affected and their families.
🔵 Treatments change lives: Appropriate therapies improve quality of life and enable those affected to lead more active, self-determined lives.
🔵 Access is crucial: Medical advances only make a difference if all patients worldwide have fair and prompt access to diagnoses and treatments.
🔵 Why awareness is so important: Rare diseases like XLH rarely get the spotlight. Through global awareness efforts, we build understanding, shorten long diagnostic journeys, and give the XLH community a strong voice!
🧬✨Together, we’re raising awareness about XLH! 👥💙

16/10/2026

FAMILY WEEKEND IN THE NETHERLANDS
The Dutch OI-organization Vereniging Osteogenesis Imperfecta can look back on a great family weekend at Landgoed de Biestheuvel in Hoogeloon last week!

From the disco/karaoke by DJ Thijs, the Next Nature Museum in Eindhoven, to the delicious food from Jorn and the pubquiz by Michaël. And to finish it off nicely together by the campfire during the last warm weekend of the year.

It's always nice to see that every year new people join in on the weekend, in addition to the familiar faces!

Next year the weekend will be organized again for members and from 8th to 10th October!

15/10/2026

OI & DIVING
At the OIFE Youth event 2025 organized by Stowarzyszenie Osób z Wrodzoną Łamliwością Kości - Polska the participants could sign up for a diving course in the deepest pool in Europe.

Some of the young people stayed in touch and together they signed up for a private diving trip to Egypt and the Red Sea. The trip was organized by Polish delegate Aneta Gałązka and the foundation for accessible sports.

Five people with OI attended the week long event, including our board member Malene Sillas Jensen.

15/10/2026

OIFE & EUROPEAN BLUEPRINT
The European Blueprint for rare diseases has been published! It is a powerful and much-needed roadmap to ensure that progress, better diagnosis, and specialized care reach every single rare disease patient in Europe.

Represented by our vice president Alessandra Tolaccia, OIFE has been part of this project from the beginning.

We now hope that the roadmap will become an Action Plan that will transform the important priorities chosen by the rare disease community into measurable actions.

🇪🇺 Europe has the expertise, networks and research infrastructure to transform the lives of people living with rare diseases. What it needs now is a coordinated plan to bring them together.

Today, EURORDIS launches the European Blueprint for Rare Diseases, setting out the rare disease community’s proposals for a future EU Action Plan on Rare Diseases.

Co-created over ten months with patients, clinicians, researchers, public authorities and industry, the Blueprint puts forward 18 priority actions across six critical areas: diagnosis, specialised healthcare, integrated care and social inclusion, data, research, and access to medicines and medical devices.

Our call is clear: the European Commission must bring forward an EU Action Plan that turns these priorities into coordinated, measurable action, with dedicated resources and patients as partners in its governance. Through 18 priority actions, this Blueprint builds on what Europe has already achieved, aims to close persistent gaps and ensure progress reaches people living with rare diseases across Europe.

📢 Read our press release and discover the Blueprint: https://go.eurordis.org/PressRelease-Blueprint