Vienna Bone and Growth Center

𝐏𝐮𝐛𝐥𝐢𝐜𝐚𝐭𝐢𝐨𝐧 𝐚𝐥𝐞𝐫𝐭: We are excited to share that, together with international experts (Joachim Horn, Kiril Mladenov) our orthopedic Vienna Bone and Growth Center team at Orthopädisches Spital Speising, including Gabriel T. Mindler, Alexandra Stauffer, and Catharina Chiari, has published a current concept article on achondroplasia treatment. 𝐊𝐞𝐲 𝐜𝐨𝐧𝐜𝐥𝐮𝐬𝐢𝐨𝐧𝐬: - New medical treatment options have the potential to revolutionize pediatric orthopedic treatment algorithms for achondroplasia. - Aspects related to deformity, function, and daily activity/quality of life (QoL) must be further assessed to fully evaluate the orthopedic benefits of novel medical treatments. - Orthopedic surgeons must adapt to these new treatment developments and actively engage in implementing multidisciplinary approaches, incorporating patients' perspectives, and reaching consensus on combined medical and surgical interventions. https://lnkd.in/dq-DE7AW #achondroplasia #multidisciplinary #raredisease #vbgc #orthopedics #deformitycorrection

We need to Centralize Resources and Data- Especially in the #RareDisease space!!! My awesome colleague #SierraPhillips has done this for our community!!! It is amazing to say the least:) It is also beautifully organized. If you have a resource for the Rare Disease community you can add your organization and it will be reviewed and processed and added appropriately:) If you are a patient this is for you! I hope you can take advantage:) https://www.librarey.com/ Please Share!!! #WomeninRare

Save the Date: Für alle Interessierten / Betroffenen Phosphatdiabetes Österreich lädt zum internationalen Bewusstseinstag ein. Unsere Vienna Bone and Growth Center Experten Roland Kocijan (Hanusch-Krankenhaus); Adalbert Raimann (Medical University of Vienna) und Gabriel T. Mindler (Orthopädisches Spital Speising) werden multidisziplinäre Aspekte zu XLH (Phosphatdiabetes) vortragen. #XLH #raredisease #VBGC #multidisciplinary

Dear friends. I need your help and there is something in it for you as well 🙂 our donation raffle is only going on for 1 more week. If you donate 10€ or more to our patient organization NF Kinder through the link below you have the chance to win a 2 week stay for 4 people in a luxury villa at the Kimasurf Calp in SriLanka! Please participate and share this with as many people as possible. Let‘s make a difference for people living with the Rare Disease Neurofibromatosis together. Thank you! https://lnkd.in/d2vUGvrV

New publication in Orphanet Journal of Rare Diseases "The Digital Atlas of Ancient Rare Diseases (DAARD) and its relevance for current research" by Gresky et al.   A very interesting piece of work. At first glance, it may not seem highly relevant for clinicians, but for scientific projects on rare bone diseases, this tool could have great potential.   We hope many other rare diseases will be included soon: XLH, other forms of rickets, Osteogenesis Imperfecta, etc.   Congratulations to the authors of the archaeological team for this innovative idea on rare bone diseases! Free full text: https://lnkd.in/djYPJMu3   #Rarediseases #Achondroplasia #AncientDiseases #MedicalResearch #DigitalAtlas

CALL FOR ABSTRACTS ON OI RESEARCH We are delighted to announce that the abstract form for OIFE’s 3rd virtual European Investigator Meeting is now open. The meeting takes place via Zoom on Friday 15 November from 14:00-19:00 CET.     We invite your abstracts on any aspect of OI research, whether basic, translational or clinical. A limited number of oral slots are available on the programme and priority will be given to abstracts describing novel research and hot topics related to OI.    We also encourage submission of case reports for discussion at the meeting. Please use the same form to submit any interesting and/or unusual cases.   Presentations will not be recorded or streamed outside of the webinar and abstracts will not be published, enabling the presentation and discussion of unpublished data.   This is an opportunity for you to present and discuss your OI-related work with an international group of fellow OI-researchers in a relatively informal setting and without the costs and time involved in travelling to in-person meetings. The aim is to facilitate collaboration and development of research in OI.   Deadline for abstracts: Friday, 4 October 23:59 CET. Link to submit abstracts and registration can be found here: https://lnkd.in/dzHDb8ra #osteogenesisimperfecta

Our I-CAM trilogy is complete! The last paper on nutrition and bone diseases has been published. Congratulations to Daniel Kraus on the publication and Amadea Medibach on a great diploma thesis and three resulting publications!

In 5 Monaten findet von 28.-30. November 2024 das nächste Neuroorthopädie-Symposium wieder an der Donau-Universität für Weiterbildung in Krems/Donau statt. Wir freuen uns auf Beiträge von 40 internationalen Top-Expertinnen und Top-Experten, diesmal zu Patienten-Empowerment, Evidenz für Behandlungen, Künstlicher Intelligenz und Ausbildungs- sowie Versorgungsstrukturen, und erwarten wieder über 300 Teilnehmerinnen und Teilnehmer aus allen Berufsgruppen im deutschsprachigen Raum. Und wir freuen uns auf Ihre Teilnahme! Lesen Sie das Programm und melden Sie sich rechtzeitig an: https://lnkd.in/dzgcEQZR #neuroortho #empowerment #ai #pediatricorthopedics #movementtherapy #childdevelopment #orthopaedictechnology #scienceeducation #masterofscience

Congratulations to Dr. Celine Akta – her abstract has been selected not only as a poster but also as a presentation at the 11th International Conference on Childrens Bone Health in Salzburg/Austria! This is an excellent presentation of our gait lab study (Orthopädisches Spital Speising / Vienna Bone and Growth Center): the disease-specific gait in XLH can be significantly improved through surgical interventions (correction of bowlegs)! However, further cofactors contributing to this disease-specific gait deviation need to be identified in future studies. #gait #deformity #xlh #ortho #iccbh #iscbh #raredisease #multidisciplinary

The 11th International Conference on Children’s Bone Health (ICCBH) of the International Society for Children's Bone Health in Salzburg (Austria) is the highlight of the year for our team at the Vienna Bone and Growth Center. Our team from the Medical University of Vienna and Orthopädisches Spital Speising, led by senior authors Adalbert Raimann and Gabriel T. Mindler, will be presenting five posters ( 2 talks) on our rare bone disease research. 1. Dr. Katharina Oder´s poster will present our data on upper limb movement in osteogenesis imperfecta (Bewegungsanalyselabor OSS) - the first upper limb movement analysis data in this heterogeneous cohort. 2. Mag. Magdalena Jabłońska will describe the challenging situation regarding physiotherapy for patients with osteogenesis imperfecta in Austria, highlighting low capacities, long waiting lists and high out-of-pocket costs. 3. Dr. Celine Akta will discuss the end of waddling gait in patients with X-linked hypophosphatemia. Our solution involves the prevention and correction of varus knee deformities, and we advocate for stopping the use of the term “waddling.” This abstract was selected for oral presentation - congratulations to Dr. Akta! 4. Dr. Florentina Haufler will present data on the quality of life in patients with XLH, showing that BMI and the number of osteotomies are associated with physical quality of life impairment. 5. Anahita Mayr’s poster will show the results of our review on lower limb deformity in different types of rickets. This systematic literature review of 126 studies, covering lower limb data on 2924 patients, underlines the importance of quality criteria for lower limb deformity assessment - essential for monitoring treatment responses. We are proud to be represented by these young, female, and multidisciplinary researchers. #multidisciplinary #raredisease #womeninscience #vbgc #iccbh #iscbh #xlh #osteogenesisimperfecta #deformitycorrection #orthopedicsugery