Interview with Adalbert Raimann, MD, PhD and Gabriel Mindler, MD 

Gabriel and I are pediatric bone specialists based in Vienna. Most of our working days are spent with children and adults who live with Osteogenesis imperfecta or other rare bone conditions. Over time, many of our patients have come not only from Austria, but also from across Central and Eastern Europe. This has made us very aware of the differences in access to expert care, but also in representation in societies and networks across Europe, especially between Western and Central/Eastern Europe. These experiences, and our collaboration with OI and other rare bone disease (RBD) patient organizations, are a key motivation behind the Central and Eastern European Bone Board (CEEBB).

At the moment, our work combines three things: treating patients, bringing colleagues together through the Central and Eastern European Bone Board (CEEBB), and running academic projects with the aim of improved care for rare bone disorders.

Who started CEEBB, and why?

The Central and Eastern European Bone Board (CEEBB) was initiated by the pediatric orthopedic and the pediatric endocrinology team of the Vienna Bone and Growth center who regularly receive referrals from Central and Eastern Europe for complex rare bone disease cases, especially children with OI and other skeletal dysplasias. Over time, it became very clear that many colleagues in the region work in relative isolation, with limited opportunity for structured exchange and joint case discussions.

We therefore decided to create a regional, multidisciplinary network – the CEEBB – to bring experts together, improve communication, and ultimately reduce inequalities in care for people with rare bone diseases, including OI. From the start, it was important to us that CEEBB was created independently of existing societies and formal structures. We wanted a low‑threshold, flexible network that makes it easy for colleagues from under‑represented regions to join, without needing titles, memberships or long approval processes.

What is the purpose of CEEBB?

The main purpose of CEEBB is to strengthen rare bone disease care – clinically and scientifically – across Central and Eastern Europe.

  • Build and maintain a living network of centers and professionals with expertise in rare bone diseases.
  • Offer a space for honest, multidisciplinary case discussions – including surgery, medical management, rehabilitation and transition.
  • Share practical know‑how: what works, what doesn’t, and how to set up better structures in different health‑care systems.
  • Connect this clinical work with research projects, so that changes in care are based on real data rather than just opinion.

Who runs it?

The foundation of the CEEBB has been coordinated from Vienna by an organizing and steering group that includes pediatric orthopedic and rare bone disease specialists including members of our patient community. In the future, a multinational and multidisciplinary steering committee will be established to represent different aspects of RBD care.

Because CEEBB is not tied to a single society, it can stay open and adaptable. Centers that might feel “too small” or not yet recognized officially as expert units can still take part fully, present their cases, and help shape the agenda. This independence is a key reason why colleagues from so many different countries and backgrounds felt comfortable joining from the very first meeting.

Different responsibilities are shared:

  • A steering committee plans meetings (physical and virtual), sets the scientific program, and oversees projects like CARE‑BONE CEE.
  • Local and regional experts from participating countries contribute as speakers, workshop leaders, and investigators in research projects.
  • Patient organizations as partners for agenda‑setting, feedback on priorities, and participation in research and educational activities

So while the logistical work is centered in Vienna, the content and energy really come from many people across different backgrounds and regions.

What are the activities?

Right now, CEEBB has four main pillars:

Annual in‑person meetings in Vienna
The first one was in January 2026; the next will be in February 2027. These meetings combine lectures, case discussions, and very practical workshops – for example, on deformity correction, guided growth and telescopic rodding, and on gait analysis.

Online meetings between the annual events
Shorter virtual meetings are planned during the year. They keep the contact alive, allow case discussions, and let us share early results from ongoing projects.

The CARE‑BONE CEE survey project
This project systematically asks centers in Central and Eastern Europe about their rare bone disease services – which patients they see, what expertise they have, which tests and treatments are available and reimbursed, how transition is organized, and how they work with patient organizations.

Joint research and harmonization efforts
On top of CARE‑BONE CEE, we are working on quality‑of‑life projects, ideas for shared registries, and more aligned diagnostic and treatment pathways across countries.

Who is the CEEBB project for? 

In CEEBB and CARE‑BONE CEE we use a broad and pragmatic definition of “Central and Eastern Europe”, based on clinical referral patterns and existing collaborations rather than a strict political or geographical definition.

We involve experts from Central and Eastern Europe in a wider sense, with a focus on regions being underrepresented in established international networks. This includes, for example, countries in Central Europe (such as Poland, Czech Republic, Hungary, Croatia), Southeast Europe (e.g., Romania, Bulgaria, Serbia, Bosnia and Herzegovina), as well as countries like Ukraine, Lithuania, Latvia, and Turkey, which share similar challenges regarding access to specialized rare bone disease care.

The exact list of countries is less important than the common reality: health systems with comparable challenges for rare bone diseases. Involvement of patient experts and organizations is a key component for the future, once the basic structure is well-established.

At the same time, the network is not “exclusive”, the central idea is to strengthen capacity in countries where rare bone disease expertise and resources have historically been less visible or less connected at the European level.

How is it financed and has there been any challenges?

The meetings and the CARE‑BONE CEE project are funded through a mixture of institutional support and project‑based grants from industry partners in the rare bone field. Their contribution makes it possible to organize meetings and provide travel grants, while the scientific and clinical content is developed independently by the steering committee and experts.

The main challenges so far have not been scientific, but practical:

  • Heterogeneity of health care systems and reimbursement rules across countries, which complicates both clinical pathways and research.
  • Language and administrative differences, which make data collection and coordination time‑consuming.
  • Limited protected time and resources for rare disease work in some centers, making it difficult for colleagues to travel or participate in additional projects.

Despite these challenges, feedback from the first meeting was excellent, with very high ratings for scientific quality, networking opportunities, and practical relevance, which motivates us to continue and expand.

What have you learned so far about the situation for OI and rare bone diseases in these countries? 

Even though our survey is still ongoing, some messages are already clear:

  • There is a lot of expertise in the region – more than many people realize, and often concentrated in single centers, and these are not always formally recognized as reference centers.
  • Access to complex orthopedic surgery for OI and other skeletal dysplasias is uneven. Some centers have long experience with complex surgeries, telescopic rodding, deformity correction and revision surgery; others have very limited options and may have to refer patients abroad.
  • The same is true for diagnostics and medical treatments. Availability of genetic testing, specific imaging, and bone‑targeted drugs varies from country to country, depending on what is reimbursed and how rare diseases fit into national policies.

These differences can lead to longer diagnostic delays, limited treatment choices, or fragmented follow‑up. One of the goals is to capture these differences clearly enough that they can be addressed.

Do people have to pay for their treatment themselves?

Basic medical care is covered everywhere by national or insurance‑based systems. However, families may still face significant direct and indirect costs. Examples include:

  • Travel and accommodation when they have to visit a distant expert center.
  • Out‑of‑pocket payments or partial coverage for physiotherapy, dental care, orthoses, wheelchairs, or home adaptations.
  • In some settings, co‑payments or special approval procedures for advanced drugs or genetic tests.

By documenting reimbursement structures and out‑of‑pocket costs, we try to distill evidence that patient organizations and clinicians can use in discussions with policymakers.

Have patients and patient organizations been involved?

Patient and family voices are a core pillar of our daily clinical work, and key element to what we are trying to build. We currently have a person living with a rare bone disorder on the CEEBB steering committee, which we regard as essential to ensure that the patient’s perspective is represented in all central decisions. In the initial foundation phase, we deliberately kept the structure and planning lean, in order to establish the network efficiently and avoid unnecessary complexity at the start.

For the next development phase, our clear aim is to establish a more structured and formalized involvement of patient representatives from different rare bone diseases and from various countries in the region. We would like these representatives to act as true partners in defining priorities, shaping projects, and jointly developing the future direction of CEEBB.

What are your next plans?

Upcoming events

In the near future, we plan to continue with regular online meetings to keep the network active, share cases and discuss early survey results. The 2nd in‑person CEEBB meeting will take place in Vienna on February 18–19, 2027, at the Orthopaedic Hospital Vienna‑Speising. The program will again put OI and other rare bone diseases at the center, and this time will put even more emphasis on the “life‑long journey” from childhood into adult life.

Can more healthcare professionals join? What about patient groups?

Absolutely. We would be very happy to welcome:

  • Health care professionals from Central and Eastern Europe who see patients with OI or other rare bone conditions – even if they are only starting to build a specialized service.
  • Adult specialists, rehabilitation teams, physiotherapists and others, because rare bone diseases do not stop at 18.
  • Patient organizations from the region and international groups like OIFE, who can bring the patient voice into every level of planning.

We are especially interested in involving colleagues from countries that were not yet represented at the first meeting, and in strengthening links with adult care, rehabilitation, and allied health professionals.

Who should people contact?

For practical questions about the meetings (registration, program, logistics), people can contact the CEEBB organizing office at the Orthopaedic Hospital Vienna‑Speising (via the events email and phone numbers listed on the meeting invitations).

For collaboration, ideas for joint projects, colleagues and patient organizations are welcome to contact us via Contact – CEEBB or via Linkedin.


Any final message for OIFE-community?

To everyone living with OI, and to your families: we know that your daily life involves much more than clinic visits and operations. School, work, relationships, independence – all of these are affected by how well health‑care systems respond to your needs. You deserve care that is not only technically good, but also coordinated, accessible and respectful.

To OIFE and the national OI organizations: your persistence, your questions and sometimes your criticism are incredibly valuable. They push us to look beyond our own hospitals and ask: “Is this good enough for everyone, or only for a few?” We hope that CEEBB can become one of the places where your voices and the voices of professionals from Central and Eastern Europe meet regularly – and where together we can turn good intentions into concrete changes.