Osteogenesis Imperfecta Federation Europe

01/09/2026

Educating new patient experts with knowledge and skills!
The EURORDIS-Rare Diseases Europe Open Academy Erdera Schools offer intensive, in-person training programs designed to equip rare disease patient advocates and patient experts with the tools they need to drive meaningful change. Through comprehensive courses, participants gain the expertise to engage effectively with stakeholders and shape policies that improve lives.

📅 Open Academy Schools 2026: Applications open now!
🗓️ Dates: June 7-10, 2027
📍 Location: Barcelona, Spain

Two courses are available:
·Medicines Research & Development
·Scientific Innovation & Translational Research

Do you have questions about the programme? Please contact [email protected] and we will provide advice.

28/08/2026

📆 REGISTER FOR OIFE CLINICAL TRIAL UPDATE 2026
On October 13th, 2026 we are offering our annual update from ongoing international clinical trials on OI. Registration is open!

The following trials are confirmed to give a status:
* The Cosmic and the Orbit trials
* The AGA2115 Clinical Study in Adults with OI (IDUN)
* The EVENITY Ph3 study
* The Boost trial
* The MOI-A trial
* The MIV-711 trial

The goal of webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. The event is free and anyone interested can attend.

🔗 More information and link to register by scanning the QR code or here: https://oife.org/what-we-do/events/clinical-trial-update/

26/08/2026

Celebrating International Dogs Day with love! 🐾
Today, we honor all dogs, especially the incredible assistance dogs who change lives.

🦮 Penny Clapcott knows a lot about this because she shares her life with River, her incredible assistance dog:
« I have an assistance dog called River who I was matched with via Canine Partners. She helps me extend my daily energy battery life by doing tasks quicker and easier for me. I also love when we're in busy places that she creates a buffer space around us which makes me feel safer. »

This , let’s celebrate the dogs who dedicate their lives to helping others. Whether they’re guiding, comforting, or simply loving unconditionally, they remind us that even the smallest paws can make the biggest difference. 💛

📷 Photo credit: Canine Partners for Life

24/08/2026

🇯🇵 New OIFE Member: Japan OI Association
Meet Tomoyasu Tashiro, Chairperson of the Japan Osteogenesis Imperfecta Friendship Association - 骨形成不全友の会!

The association, founded in the early 1980s has registered 180 members, they are building a supportive community and hosting hybrid events twice a year.

Future Goals:
🌟 Grow their community to 200+ members.
🌟 Host more events, both in-person and online, to connect members.
🌟 Build bridges globally so their members can learn, share, and grow together.

🔗 Learn more about the Japan OI Association on our website: https://oife.org/2026/07/25/new-oife-member-japan/

21/08/2026

💻 Cohort 10: Registrations Open!
Apply now for the EUPATI Patient Expert Training Programme (PETP)

European Patients' Academy on Therapeutic Innovation (EUPATI) has opened registrations for the 10th edition of the EUPATI Patient Expert Training Programme (PETP).

Their 12-14 month training programme takes you through the full medicines Research & Development journey - clinical trials, regulatory pathways, health technology assessment ( ) - and shows you exactly where and how patients can make an impact.
📆 Deadline to apply is November 1st.
📧 Please contact us on [email protected] if you have questions about the programme.

🔗 Find out more here: https://learning.eupati.eu/admin/tool/custompage/view.php?id=3

19/08/2026

🇰🇷 New OIFE Member: Korea OI Association
Meet Du Ri Kim, chairperson of the Korea Osteogenesis Imperfecta Association , and her daughter, both living with OI. After her daughter’s fracture at just 7 months old, Du Ri Kim has led the association since 2017.
has very few OI specialists, and treatment is a heavy financial burden due to strict insurance rules. Families often face misunderstandings, limited medical access, and high costs, especially outside the capital Seoul.

Founded in 2003, the organization:
✅ Run a summer family camp for 20 years (free for participants!)
✅ Host seminars, workshops, and recreation activities for 50+ families
✅ Started a smartphone film academy to share OI stories
✅ Provides a support network via KakaoTalk (chat channel) for families

💪 Biggest challenges?
Low awareness & limited funding
No paid staff, entirely volunteer-run
Regional gaps in medical care

Future goals?
🌟 Improve medical cost support for OI patients
🌟 Strengthen adult care together with medical partners
🌟 Secure stable funding and global connections

🔗 Learn more about the Korea OI Association on our website: https://oife.org/2026/06/14/new-oife-member-korea/

18/08/2026

ACCESS TO TREATMENTS
OI are one of the 94% of rare conditions that does not have an approved treatment. Until now OI has been treated with different kinds of bisphosphonates, which are developed for osteoporosis and used off label in OI.

There are currently several new and potential treatments being investigated for OI. But even if a clinical trial is successful, that doesn't necessarily mean the potential therapy comes to the market or is paid for in your country.

The European Medicines Agency approves market access in Europe, but decisions about national approval and reimbursement are made in each and every country.

OIFE works with the national groups for OI to ensure that they are are knowledgeable on regulatory processes and reimbursement of new therapies. Would you also like to learn more about this and become a future volunteer nationally or in Europe?

Explore the EURORDIS-Rare Diseases Europe Open Academy courses on market access and HTA, clinical trial ethics, and the European Medicines Agency: https://go.eurordis.org/eurordis-health-access

🔗 Learn more about about their work on access to treatments: https://go.eurordis.org/eurordis-treatments

17/08/2026

MONEY FOR RESARCH ON OI AND AGING
Thanks to a $2.4 million grant from the National Institute on Aging, researchers at the University of Arkansas for Medical Sciences in the USA (UAMS) are studying mechanisms that could be manipulated to improve bone formation and bone strength in aging populations and in people with brittle bone disease.

Melda Onal, Ph.D., an assistant professor in the UAMS College of Medicine Department of Physiology and Cell Biology, is the primary investigator for the project, which will receive the funding over five years from the division of the National Institutes of Health.

Onal said her laboratory focuses on autophagy, an intracellular recycling process that is critical for the survival and function of bone-forming cells. This process is thought to be inadequate in both aging and osteogenesis imperfecta (OI).

Read more here:

LITTLE ROCK — Thanks to a $2.4 million grant from the National Institute on Aging, researchers at the University of Arkansas for Medical Sciences (UAMS) are studying mechanisms that could be manipulated to improve bone formation and bone strength in aging populations and in people with brittle bon...

14/08/2026

🇹🇼 New OIFE Member: Taiwan OI Association
Living with (OI), Guo Bo-Ling has spent 20+ years supporting the OI community in Taiwan. As a supervisor of the 先天性成骨不全症關懷協會 Taiwan Osteogenesis Imperfecta Association and OIFE liaison, she connects patients, improves support, and empowers individuals with OI.

The OI-group in Taiwan has 427 registered OI patients, many facing daily challenges like fractures and mobility issues. The association, founded in 1999, provides critical support, from medical aid to community-building activities.

💪 Biggest challenge:
Privacy laws make it tough to reach new patients.

Future goals?
🌟 Expand support
🌟 Empower younger members
🌟 Open a dedicated OI center

🔗 Learn more about the Taiwan OI Association on our website: https://oife.org/2026/06/05/new-oife-member-taiwan/