Osteogenesis Imperfecta Federation Europe

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België
Heffen
Osteogenesis Imperfecta Federation Europe

OIFE is an umbrella for organizations dealing with the rare condition osteogenesis imperfecta (OI).

09/06/2026

OIFE GENERAL ASSEMBLY YESTERDAY 🎉
We are happy to say that OIFE's general assembly, which took place on Zoom last night went well. We were 35 participants from 15 European and 3 associate member organizations - in total 17 countries.
In addition four members of our advisory board took part and contributed to some of the topics. The voting members of OIFE unanimously approved the work of OIFE Board in 2025 and positive feedback was received. In addition to the formal business, the OIFE Board gave an update on current projects and future events.

Now we can look forward and use our energy on planning activities in 2026 and 2027.

06/06/2026

This week OIFE was represented by Alessandra Tolaccia at the European Conference on Rare Diseases & Orphan Products (ECRD) in Prague.

opened with a clear message: Europe has the knowledge, the momentum and the community needed to act. Now it needs coordination, political will and implementation.

🫂 On Day 1, the sessions were about «Advancing Holistic Care for Rare Conditions»: Delivering better outcomes means looking beyond clinical care alone. Discussions focused on the value of patient-reported evidence, experience measures, registries and real-world data to better understand the full impact of rare diseases.

💚 On Day 2, «Mental Health and Wellbeing»: A clear call emerged to move beyond fragmented, episodic support and towards lifelong, integrated approaches that treat mental health as an essential component of rare disease care, not an afterthought. Prevention, resilience and quality of life must sit alongside physical health throughout the care journey.

Two key points emerged:
➡️ Improving outcomes for people living with rare diseases requires healthcare systems that are more coordinated, more person-centred, and better equipped to respond to the realities of rare disease throughout life.

➡️ Involving patients is absolutely essential to drive more meaningful insights, better outcomes, and true innovation.

One June 4th, Alessandra was part of the RealiseD panel, which is a multi-stakeholder public private partnership designed to explore how evidence generation can evolve alongside innovation. In the panel, the discussion explored how evidence generation can evolve through innovative initiatives such as the RealiseD project.

Learn more about the ECRD conference and see the full programme here:https://download2.eurordis.org/ecrd/ECRD_2026/ECRD2026_Full_Programme.pdf

01/06/2026

OIFE AT OPEN ACADEMY IN BARCELONA 🇪🇸
EURORDIS-Rare Diseases Europe Open Academy offers the skills, knowledge and confidence that patient advocates need to engage with different stakeholders as equal partners. This year, OIFE was represented by our Polish delegate Aneta Gałązka in the EURORDIS Open Academy in Barcelona.

« It was a really valuable experience, with the chance to engage with institutions like the European Medicines Agency, ERN-RND, and HTA bodies working at the heart of rare disease research and care. One clear takeaway for me is that meaningful patient involvement isn’t optional actually it’s what makes research truly ethical, feasible, and innovative. I also had the chance to share a personal story from the OIFE Youth Event 2025, including my passion for diving. I’m leaving this programme with gratitude, new insights, and an even stronger commitment to patient advocacy and to ensuring that lived experience is genuinely valued in decision-making. »

🤝 An inspiring experience bringing together patient advocates, researchers, and experts from across Europe to advance rare disease research and patient engagement.

30/05/2026

💻 OIFE WEBINAR: Demystifying Clinical Trials: how they work and why they matter / Patient Empowerment through education
Are you a patient or a caregiver? Ever wonder how new medical treatments reach patients?
This webinar is designed specifically for patients and caregivers who want to understand the science and decisions behind their care and become an active part in it.

Register and join us in this journey of learning, because knowledge is power when it comes to your health: https://us02web.zoom.us/meeting/register/8JRv-ZB8R86lWrwzPnyIEg #/registration

🔍 What will you learn:
• The phases of Clinical Trials and patient safety.
• What HTA (Health Technology Assessment) means and how it impacts drug availability.
• What is ERN BOND - European Reference Network on Rare Bone Diseases and how you can get involved and make your voice heard.

🎤 Confirmed Speakers:
• Claudia Fuchs - Senior Project Manager Therapeutic Development at EURORDIS-Rare Diseases Europe
• Dalma Hosszú - Head of Patient centricity and engagement at Syreon Research Institute
• Luca Sangiorgi - ERN BOND Coordinator

29/05/2026

ERN BOND MET THE NORWEGIAN PATIENT GROUPS
After the Annual Meeting of ERN BOND - European Reference Network on Rare Bone Diseases, Rebecca T. Skarberg and the other ePags hosted a workshop for the Norwegian patient groups for rare bone conditions. The purpose was to spread awareness about ERN BOND, but also to discuss patient priorities in the future planning of the network activities. Well done!

29/05/2026

ERN BOND IN OSLO - DAY 2
Also today Rebecca and Ingunn represented OIFE at the annual meeting of ERN BOND - European Reference Network on Rare Bone Diseases.

After hearing about different overarching research initiatives, the ERN BOND Plenary Meeting in Oslo brought together representatives from key international scientific societies to discuss ongoing collaborations and future opportunities.

The session featured contributions from:
• Joachim Horn on behalf of EPOS - European Paediatric Orthopaedic Society
• Ralph Sakkers representing the International OI Surgeons Group led by Dr Richard Kruse from the USA
• Natasha Appelman-Dijkstra from European Calcified Tissue Society - ECTS
• VALERIE Cormier Daire representing ESHG - European Society of Human Genetics
• Karen E. Heath on behalf of the International Skeletal Dysplasia Society (ISDS)

The morning program concluded with a presentation by Maurizio Scarpa on the Health Leadership Mission for Rare Diseases Initiatives, where OIFE is also involved in one work package: https://www.brains4brain.eu/eu-activities-polices/hlm-rare/

28/05/2026

OIFE AT ERN BOND MEETING IN OSLO
From May 28-29 the the different clinicians and patient representatives from ERN BOND - European Reference Network on Rare Bone Diseases are meeting in Oslo at their annual meeting. OIFE was represented by Rebecca T. Skarberg (ERN BOND epag) on site and Ingunn Westerheim, who took part online.

Topics covered were joint replacement in OI and other rare bone conditions, ERN BOND projects on transition, genetic testing, registries, European case discussions and clinical decision making on orthopaedic surgery.

Natasha Appelman-Dijkstra gave an update on EuRREB - the European Registries for Rare Endocrine and Bone conditions and encouraged all the clinicians to take the new survey on OI and treatment initiation: https://lnkd.in/eSp672HB

28/05/2026

📢 Join the upcoming EURORDIS-Rare Diseases Europe webinar on the latest Rare Barometer survey results!
Discover key insights from people living with rare diseases and their families, including the daily challenges they face, barriers to social participation, disability recognition, and access to support services across Europe. The survey gathered responses from nearly 10,500 participants worldwide.

🗓️ Date: 18 June 2026
⏰ Time: 15:00-17:00 CEST

The webinar is an important opportunity for patient advocates, healthcare professionals, researchers, and the wider rare disease community to better understand the realities of living with a rare disease and how these findings can help shape future policy and advocacy efforts.

🔗 Register and learn more: https://us02web.zoom.us/meeting/register/gBMlm_2hQMqq7PQeAP2bkw #/registration

27/05/2026

Meet Kevin, who has joined the OIFE Webmaster team together with Vern.
In a recent interview, Kevin Vanantwerpen from Belgium 🇧🇪 shares his journey as a person living with (OI) and his motivation to support the community as one of our volunteer webmasters.

Living with OI type 4, Kevin brings both personal experience and professional expertise as an IT consultant—combining creativity and technology to strengthen OIFE’s digital presence.

Quote: "What I value most in the OI community is the sense of recognition and understanding — being surrounded by people who truly get what it means to live with OI, and who share both the challenges and the positive sides."

💻 Read more about Kevin on our website: https://oife.org/2026/04/24/welcome-oife-webmaster-kevin/

27/05/2026

OIFE AT OPEN ACADEMY IN BARCELONA
OIFE’s goal is that all projects affecting OI directly should have some kind of patient involvement. The purpose is to ensure that our needs, concerns and expectations are properly addressed and considered in different phases of a project.

Sometimes the input from patient experts are needed, and we encourage individuals to access courses such as Open Academy.

This week EURORDIS-Rare Diseases Europe is bringing together 70+ patient advocates, researchers, and community leaders from across Europe for the culmination of their six-month learning journey with the EURORDIS Open Academy.

Open Academy empower patient advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners. And this year OIFE is represented by our Polish delegate Aneta Gałązka.

Adres

Schotelveldstraat 17
Heffen
2801

Website

http://www.oife.org/

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