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Care4BrittleBones Foundation

@care4bb

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#Care4Brittlebones aims to improve the #qualityoflife of people with #osteogenesisimperfecta #brittlebones
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Quality of Life 4 All Conference What if we came together to shape a future where quality of life truly is for everyone in the rare bone community? Join us at the Quality of Life 4 All Conference for inspiring conversations, fresh ideas, meaningful connections, and practical insights focused on creating a more inclusive and sustainable future. What can participants expect? • Inspiring speakers and thought-provoking discussions • Opportunities to exchange knowledge and experiences • New perspectives, innovative ideas, and practical solutions • Meaningful networking with people who share a passion for positive change • A space to connect, learn, collaborate, and be inspired Why attend? Because real change starts with coming together. Whether you are a professional, researcher, policymaker, community leader, student, or simply passionate about improving quality of life for the rare bone community, this conference offers an opportunity to learn, connect, and contribute. Register here; https://www.qualityoflife4all.org/ Be part of the conversation. Be part of the change. Quality of Life 4 All because a better quality of life should be within everyone’s reach. #rarebonedisease #QualityOfLife4All #Conference #QualityOfLife #Inclusion #Innovation #Collaboration #BetterFuture by @care4bb
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16 hours ago
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From research to real-world impact: advancing basic healthcare for people with Osteogenesis Imperfecta. Last week, at the ASBMR Annual Meeting 2026 in Boston, Vrisha Madhuri, Angela Cheung and Muhammad Kassim Javaid presented our work on developing a consensus on basic healthcare for people living with Osteogenesis Imperfecta (OI). Research and experience are invaluable, but their true value lies in reaching people and making a real difference in healthcare for people with OI. For this to happen, communication and engagement are crucial. We need to ensure that knowledge and expertise translate into meaningful improvements in everyday healthcare, wherever people with OI live. We are proud and grateful for the fantastic support from the many organisations that have already endorsed our work. Their commitment is an important step towards building a shared understanding of what good, basic healthcare for people with OI should look like. Together, we can bridge the gap between research, clinical practice and the lived experiences of people with OI, and turn knowledge into better care. Because research only makes a real difference when it reaches the people who need it. #ASBMR2026 #OsteogenesisImperfecta #OI #BoneHealth #PatientEngagement #ConsensusBuilding #RareDiseases #BetterHealthcare by @care4bb
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6 days ago
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World mental health day Living with a health condition can affect much more than physical health. It can influence emotional wellbeing, confidence, relationships, independence, and how connected we feel to our communities. At the QualityofLife4All conference we will also be looking at daily life and wellbeing. The physical, emotional and social dimensions of living well with a rare bone disease, at all ages. If you would like to know more about the conference join here; https://www.qualityoflife4all.org/ Living with a health condition can affect much more than physical health. It can influence emotional wellbeing, confidence, relationships, independence, and how connected we feel to our communities. Our ongoing work in the Adult Health project is helping to shine a light on these important aspects of life. For people and families living with OI, everyday life can bring unique physical, emotional, and social challenges. By understanding these experiences and creating opportunities to share, connect, and support one another, we can work towards care that recognises the person behind the condition. Sometimes, quality of life starts with something simple: being heard, being understood, and knowing you are not alone. Let’s continue building communities where talking about mental health is welcomed, support is accessible, and everyone has the opportunity to thrive. #QualityOfLife4All #MentalHealth #EmotionalWellbeing #Wellbeing #AdultHealth #OsteogenesisImperfecta #OI #Care4BrittleBones #RareDiseases #LivedExperience #CommunityCare #HealthAndWellbeing by @care4bb
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10 days ago
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Sharing Knowledge, Sharing Life, Giving women’s health the attention it deserves Building on the Adult Health Project Consensus, developed in 2025–2026 with 116 essential statements on adult health and OI, we took another important step towards improving care and understanding of life with OI. A special focus was placed on Women's Health. Women with OI face unique questions and challenges throughout their lives. From hormonal changes and menstruation to pregnancy, menopause and bone health, these topics deserve more attention, better understanding and dedicated support. By sharing personal experiences and exchanging knowledge, we helped bring these often-overlooked subjects into the spotlight. Our goal is to make sure that women with OI feel heard, understood and supported, and that healthcare professionals have access to the knowledge they need. Because living with OI is about more than medical care. It's about being understood, sharing experiences and improving quality of life at every stage. Together, we are building a future in which adult health, including women's health, receives the attention it deserves. #Care4BrittleBones #OIAdultHealth #WomensHealth #OsteogenesisImperfecta #OI #AdultHealthProject #SharingKnowledgeSharingLife #OICommunity #BetterCareTogether by @care4bb
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12 days ago
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DOE MEE EN HELP CARE4BRITTLEBONES! Heb jij al eens gedacht aan wat je met een lege fles of een statiegeldbon kunt betekenen? Met een klein gebaar kun jij écht het verschil maken! Kom in actie! Vraag bij jouw lokale supermarkt, sportclub of vereniging of zij statiegeldbonnen, flessen en blikjes willen inzamelen voor Care4BrittleBones. Je kunt hierbij gebruik maken van de flyer en folder ( te vinden op facebook of de website). Zodra je alles hebt ingezameld kun je het opgehaalde bedrag overmaken naar; IBAN: NL44ABNA0589310755 BIC: ABNANL2A t.n.v. Stichting Care4BrittleBones Jouw hulp maakt het verschil! Iedere fles, ieder blikje en iedere statiegeldbon telt. Samen kunnen we geld inzamelen en ons inzetten voor mensen met Osteogenesis Imperfecta (OI). Dus wacht niet langer! Stap vandaag nog op jouw supermarkt of club af en vraag of ze mee willen doen. Ken je iemand die hierbij kan helpen? Tag diegene of deel dit bericht! Maak een foto van jouw actie en deel deze met ons! Samen maken we van kleine gebaren een groot verschil! #Care4BrittleBones #KomInActie #StatiegeldActie #BrozeBotten #SamenSterk #ElkeFlesTel by @care4bb
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20 days ago
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QualityOfLife4All 2026 Sixth International Online Rare Bone Diseases Conference. We are excited to announce we will be teaming - up with @care4bones for the 6th QualityOfLife4All Conference, taking place online on 21 November 2026. Under the theme “Professional knowledge and lived experience, together for a better quality of life,” the conference brings together people living with rare bone diseases, families, healthcare professionals, researchers, patient organisations, and partners from around the world. Four key themes: • Clinical care and research • Daily life and wellbeing • Lived experience • Working together Join a shared conversation focused on learning, collaboration, lived experience, and practical ways to improve quality of life across rare bone disease communities. Talks | Panel conversations | Q&A | Cross-condition learning The QualityOfLife4All Conference 2026 is a place where professional knowledge meets community experience, because rare is stronger together. 📅 21 November 2026 💻 Online 🌐 qualityoflife4all.org #QualityOfLife4All #RareBoneDiseases #RareDisease #QualityOfLife #Care4Bones #Care4brittlebones #RareIsStrongerTogether by @care4bb
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a month ago
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Invitation to join the global Adult Health 4 OI Project! Are you interested in improving adult health and quality of life for people living with Osteogenesis Imperfecta (OI)? We believe we can make a real difference by working together across the OI community, people with OI, families, and healthcare professionals on the topics that matter most. ✨ The Adult Health 4 OI Project runs until 1 June 2027, and we would love for you to be part of it! 🎥 Check out the video from Dagmar Mekking, Director of the Care4BrittleBones Foundation, to learn more. 🌎 We are especially interested in participants from countries that currently do not have an Expert Centre for Adults with OI. 👉 Interested? Sign up here: https://www.surveymonkey.com/r/OIadultproject Together, we can work towards better adult health and a brighter future for everyone with OI. #OI #OsteogenesisImperfecta #BrittleBones #AdultHealth #OICommunity #RareDisease #Care4BrittleBones #GlobalOICommunity by @care4bb
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a month ago
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OI Adult Health Weekend – Sharing Knowledge & Sharing Life What happens when 30 people with OI come together and give everything they know, experience and energy? An incredible weekend of learning, sharing and connection! Building on the Adult Health Project Consensus developed in 2025–2026 with 116 essential statements on Adult Health and OI. We worked relentlessly together to take the next step. With valuable input from Isala professionals, we explored seven important areas of adult life with OI: 🔹Fractures 🔹Joints & Ligaments 🔹Fitness 🔹Lifestyle 🔹Women’s Health 🔹Emotional Wellbeing 🔹Older Age 🔹Medical Treatment Options The information will flow into "knowledge leaflets" and other educational material. And we didn’t stop there. Together, we created 10 videos sharing real-life experiences, and contributed ideas for a major artwork, “Life as an Adult with OI” an artwork in whist we hope everyone with OI can recognize something of themselves. Perhaps most importantly, we exchanged knowledge in the best possible way: Everyone gave everything they knew and went home with new knowledge from each other. And along the way, we made new friends for life. A huge thank you to all 30 participants, the professionals from Isala, and especially Agis Innovatiefonds, whose support made this unforgettable weekend possible. 💙 #unforgettable #osteogenesisimperfecta by @care4bb
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a month ago
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Did you know that Care4brittlebones supports research with the funding we receive? Over the coming period, we will spotlight some of the research we have supported in the past. Osteogenesis Imperfecta (OI) is best known for fragile bones, but new research from Université Catholique de Louvain and Clinique Universitaire Saint-Luc in Belgium highlights another important part of the condition: connective tissues such as tendons and ligaments. The study found that: 🔹 53% of participants reported ligament problems, while 47% experienced tendon problems. 🔹 Adults with OI showed lower tendon stiffness in the legs compared with people of the same age. 🔹 All participants in the study demonstrated reduced grip strength. 🔹 Perhaps most strikingly, 82% of adults experienced kinesiophobia — a significant fear of movement, often linked to feeling vulnerable and worrying about injury. The impact of OI also appears to change throughout life. Children may experience a greater emotional impact, while adults can face increased challenges with general health, fatigue and low energy. Why does this matter? These findings reinforce the need to look beyond bone health when caring for people with OI. Understanding tendon and ligament function, muscle strength, fatigue and fear of movement could help healthcare professionals develop more personalized approaches to rehabilitation and physical activity. Most importantly, supporting people with OI to move safely and confidently may be an important part of improving both physical function and quality of life. Research like this helps build a more complete picture of OI, because stronger care starts with understanding the whole person, not just the bones. #OsteogenesisImperfecta #OI #RareDisease #ConnectiveTissue #Tendons #Ligaments #Physiotherapy #Rehabilitation #Kinesiophobia #QualityOfLife #RareDiseaseResearch by @care4bb
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2 months ago
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Did you know that Care4brittlebones supports research with the funding we receive? Over the coming period, we will spotlight some of the research we have supported in the past. A 3D study by Markus Bastir and Juan A. Sanchis-Gimeno explored how the internal shape of the rib cage and spine relates to lung function in adults with OI. Using CT scans and 3D analysis, researchers found that rib shape appears to have a much stronger relationship with breathing ability than spinal shape. Features such as more horizontal ribs, a deeper chest, and greater chest asymmetry were associated with poorer lung function. Interestingly, although scoliosis is common in OI, spinal curvature itself was not significantly associated with lung function in this study. Why does this matter? The findings suggest that supporting rib cage mobility and breathing mechanics may be an important part of respiratory care in OI. Targeted physiotherapy, specialized orthopaedic care, and surgery when appropriate could all play a role. This research highlights an important shift: when we think about respiratory health in OI, we need to look inside the chest, not just at the spine or the external appearance of the rib cage. Understanding the mechanics of breathing could help guide more targeted approaches to care and improve quality of life for people living with OI. #OsteogenesisImperfecta #OI #RareDisease #RespiratoryHealth #LungHealth #Physiotherapy #Orthopaedics #MedicalResearch #RareDiseaseResearch by @care4bb
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2 months ago
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Do you know the special socks from @medsocks_nl ? Back in 2020, MedSocks approached us completely out of the blue. They had created a line of socks inspired by fractures, sold them in hospitals and online, and wanted to donate part of the proceeds to Care4BrittleBones. We were genuinely surprised—and, of course, incredibly grateful. What started as a wonderful gesture has grown into a lasting partnership. Every year since then, MedSocks has donated part of its profits to support our work. But what makes this collaboration so special is that it goes beyond the financial contribution. The team behind MedSocs is truly interested in our mission. They visit us personally to hand over their donation, learn about our work, and share in the impact they're helping to create. Behind MedSocks is a group of passionate healthcare professionals who turned a simple idea into something meaningful. Alongside their regular jobs, they continue to grow this initiative because they believe in making a difference. We recently received another generous donation—and there's even more exciting news to come. A special edition sock is on its way, so stay tuned! A huge thank you to everyone at MedSocks. Your creativity, commitment, and generosity make a real difference for people living with brittle bones. And to anyone wondering how to support a cause they care about: sometimes the best fundraising ideas start with something simple. Whether it's a product, an event, a challenge, or another creative initiative, your idea could make a lasting impact too. We'd love to hear from you! #OsteogenesisImperfecta #MedicalResearch #RareDiseaseResearch #OI #BrittleBones #SupportResearch #ResearchMatters #Fundraising by @care4bb
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2 months ago
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Did you know that Care4brittlebones supports research with the funding we receive? Over the coming period, we will spotlight some of the research we have supported in the past. Improving quality of life through evidence-based rehabilitation for children with Osteogenesis Imperfecta Physical rehabilitation plays a vital role in helping children and adolescents with Osteogenesis Imperfecta (OI) build strength, improve mobility, and achieve greater independence. But until recently, there was no internationally agreed guidance to support healthcare professionals. An international team led by Dr. Oliver Semler (University of Cologne) and Birgit Müller (Unireha, Center of Prevention and Rehabilitation, Cologne) brought together experts from 14 countries to develop the first evidence-based recommendations for physical rehabilitation in children and adolescents with OI. The project resulted in 17 consensus statements covering key areas of care, including: ✅ Musculoskeletal health ✅ Spine management ✅ Infant development ✅ Mobility ✅ Post-surgical rehabilitation ✅ Self-care and upper limb function ✅ General rehabilitation principles Recognizing that every child with OI is unique, the recommendations emphasize individualized care based on disease severity and personal goals. The impact has been truly global: 🌍 The guidelines have been shared through international educational webinars. 🌍 They are being translated into multiple languages, including Chinese and Portuguese. 🏆 The project received the HanseMerkur Child Protection Award (2019), recognizing its contribution to improving care for children. This work continues through Foundation Care4BrittleBones, which is collaborating with experts to develop practical rehabilitation tools that empower people with OI, their families, and therapists to achieve the best possible outcomes. Together, we're helping children with OI move with greater confidence, independence, and opportunity. #OsteogenesisImperfecta #RareDisease #PhysicalRehabilitation #Physiotherapy #OccupationalTherapy #PediatricCare #EvidenceBasedMedicine #GlobalHealth #HealthcareInnovation #Care4BrittleBones by @care4bb
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2 months ago
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