New Best Practice Recommendations Published for Adults with Severe Osteogenesis Imperfecta

 

The Brittle Bone Society is proud to announce the publication of a landmark paper, titled “Brittle Bone Society best practice management recommendations for adults with severe Osteogenesis Imperfecta (OI), including type III OI.”

Lead by Chair of the BBS Medical Advisory Board, Prof Muhammad Kassim Javaid and developed by a multidisciplinary working group of clinicians, researchers, and individuals with lived experience of OI, the publication provides the first comprehensive UK-focused guidance for the diagnosis, assessment, management, and monitoring of adults living with severe OI.

Adults with severe OI often face complex health needs that extend beyond bone fragility, including respiratory, cardiovascular, dental, hearing, mental health, and mobility concerns. The guidance recognises the need for coordinated, person-centred care and offers practical recommendations for healthcare professionals, patients, families, and carers.

Members of the BBS community, including those with OI and caregivers, played an active role in shaping the recommendations, ensuring that quality of life, emotional wellbeing, and everyday challenges are reflected alongside clinical considerations.

The document also includes clinician and patient checklists designed to support more consistent care, improve communication during appointments, and help identify gaps in services. We hope the recommendations will contribute to improved standards of care across the NHS, support the development of new services, and guide future research into OI.

We are delighted to see this important work published and would like to thank everyone involved whose expertise and lived experience helped make this guidance possible. The full paper is now available to read online.

 

You can read this here.

We are delighted to announce the recipients of this year’s Gareth Cumming Adventure Memorial Award: Will Cannon (Arts & Music), Charlotte Proud (Healthcare), and Jhon Bateman (Travel).

This year’s award attracted a record number of applications, and the trustees were greatly impressed by the exceptional quality, creativity and determination demonstrated throughout the application process. As a result, and in recognition of the outstanding standard of submissions received, the trustees took the decision to award grants to three recipients this year.

Representing the categories of Arts & Music, Healthcare, and Travel, Will, Charlotte and Jhon each stood out for their compelling proposals, clear sense of purpose and commitment to pursuing meaningful personal goals. Their applications embodied the adventurous spirit that the Gareth Cumming Adventure Memorial Award was established to celebrate and support.

We extend our congratulations to all three recipients and look forward to following their individual journeys over the coming months. We are excited to see how they utilise their grants to further their aspirations, embrace new opportunities and create lasting impact through their chosen pursuits. We look forward to sharing updates on their progress and celebrating their achievements with our wider community.

Welcome to our latest newsletter! We’re delighted to share a fresh roundup of what the Brittle Bone Society has been working on over the past few weeks. Inside, you’ll find updates on our ongoing projects, new initiatives, and the meaningful progress we’re making to support the Osteogenesis Imperfecta community.

 

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March 2026

February 2026

January 2026

Brittle Bone Society (BBS) Announces Retirement of Chief Executive Patricia Osborne

 

Dundee, Scotland – The Brittle Bone Society (BBS) has announced that its Chief Executive, Patricia Osborne, will retire from her role at the end of December 2026, following more than 16 years of dedicated leadership.

Patricia joined the Brittle Bone Society in 2010 after responding to an advertisement for a new Chief Executive to lead the charity from its headquarters in Dundee. Over the past 16 years, she has played a pivotal role in shaping the organisation and strengthening its support for people living with osteogenesis imperfecta (OI), commonly known as brittle bone disease.

During her tenure, Patricia successfully led the organisation through three strategic plans and oversaw several significant developments. Most notably, she was instrumental in establishing the Society’s Medical Advisory Board and introducing its Research Grants Programme, which is managed by its Scientific Advisory Board and continues to support vital research into OI.

Working from the charity’s Guthrie Street offices, Patricia also ensured the continued delivery of the Society’s core support services, including the provision of funded mobility equipment such as wheelchairs and specialist aids. She also championed a broad programme of events and activities that have helped keep the OI community informed, connected and supported across the UK and Ireland.

Patricia has helped raise the profile of OI care at Parliamentary level and led the Society’s engagement with policymakers, helping to deliver influential events at both the Scottish Parliament and Westminster that highlighted gaps in rare disease care and amplified the voices of people affected by OI.

Reflecting on her time with the charity, Patricia said:

“It has been the greatest privilege of my professional life to help carry out the mission of the Brittle Bone Society. I’ve enjoyed the support of an amazing Board of Trustees and the commitment of exceptional, hard-working staff. I will really miss the warmth and encouragement of everyone in the OI community.

“I am confident, however, that the charity will continue to provide support when it is needed and carry on the fight to ensure the voices of people living with OI are heard and understood.”

Chair of Trustees, Elaine Healey, added:

“After 16 years of dedicated and inspirational leadership, our Chief Executive, Patricia Osborne, has decided to retire. Throughout Patricia’s time at the helm, she has played a key role in shaping and strengthening our charity. I am deeply grateful for her collaborative approach, her compassion, ingenuity and tremendous energy.

“Patricia’s are big shoes to fill. On behalf of the Board of Trustees, I sincerely thank her for her dedication to the OI community, her unwavering commitment to the Brittle Bone Society and the enthusiasm she has brought to the role throughout her years of service.”

The recruitment process to appoint Patricia’s successor is ongoing, with further details to be announced in due course.

Ends.

In July, the BBS travelled to Florida, USA to attend the Osteogenesis Imperfecta Foundation’s National Conference.

Representing the Brittle Bone Society (BBS) at the event were our Chief Executive Officer, Patricia Osborne, Trustee Liz Robertson, and members of our Medical Advisory Board, Dr Judith Bubbear of the Royal National Orthopaedic Hospital, London, and Dr Catherine DeVile of Great Ormond Street Hospital, London. Their participation highlighted the charity’s ongoing commitment to sharing expertise, fostering collaboration and supporting developments within the international Osteogenesis Imperfecta (OI) community.

Attending the OIF National Conference provided a valuable opportunity for the BBS to connect with members of the global OI community and strengthen international partnerships. The conference brought together individuals living with OI, families, healthcare professionals, researchers, advocates and support organisations for several days of educational sessions, networking opportunities and collaborative discussions focused on advancing care, support and research for those affected by the condition.

During the conference, both Dr Bubbear and Dr DeVile delivered engaging and informative presentations, sharing their extensive knowledge and clinical experience with delegates. Their contributions were warmly received and demonstrated the high standard of expertise and dedication that continues to support individuals and families affected by OI across the UK and beyond.

The event also provided an excellent platform for meaningful conversations with colleagues from around the world, enabling the exchange of ideas, experiences and best practice. These opportunities to collaborate internationally are vital in helping to drive progress, improve understanding of OI and ensure that people living with the condition benefit from the latest knowledge and innovations in care and support.

We are delighted to continue strengthening our longstanding friendship with our OI colleagues and friends across the Atlantic. The relationships built and nurtured through events such as this are invaluable, and we look forward to maintaining and developing these important international connections in the years ahead.

We extend our sincere thanks to the OIF for their kind invitation to the BBS representatives and for hosting such a well-organised, informative and inspiring conference. It was a privilege to take part, and we look forward to future opportunities to work together in support of the global OI community.

Following our Mini Conference in Athlone, Ireland, we are pleased to share an exciting public and patient involvement (PPI) opportunity for people living with a rare condition in Ireland.

At the conference, Professor Rachel Crowley, Consultant Endocrinologist at St Vincent’s University Hospital Dublin and the newest member of our Medical Advisory Board, spoke about the Rare Disease Clinical Trial Network, which she co-leads.

The network aims to increase both the quality and availability of rare disease clinical trials in Ireland by supporting trial design and set-up, improving inclusivity in clinical research, and providing education and training opportunities for early-career researchers working in the rare disease field.

If you would like to contribute your lived experience and help shape the future of rare disease research, you can get involved by becoming a PPI Partner. Find out more and sign up here.

Brittle Bone Society (BBS) are delighted to launch the return of this award in the name of our late Trustee, Mr Gareth Cumming.

 

We invite applications from individuals aged 18 or over, living in the UK or Ireland, who have Osteogenesis Imperfecta (OI) and are eager to broaden their horizons. Applicants may request up to £1,000 to support an experience, opportunity, or personal goal that will enrich their lives in a meaningful way.

This award is ideal for anyone who wants to:

• Travel independently or explore a new destination
• Build confidence by meeting new people or taking part in community activities
• Develop new skills through education, training, or personal development courses
• Pursue an ambition that feels just out of reach due to financial, physical, or practical barriers

Living with OI can present unique challenges, and certain experiences may require additional planning, support, or resources. Gareth firmly believed that “nothing is impossible”, and this award exists in that spirit – to help remove obstacles and open doors.

If your idea doesn’t fit neatly into a category, that’s absolutely fine – the award is intentionally flexible to support a wide range of goals.

 

Why This Award Exists

 

The purpose of Gareth’s Memorial Award is to:

• Reduce barriers that may prevent you from pursuing your goal
• Provide practical support where extra resources are needed
• Boost confidence and encourage independence
• Make a positive, lasting difference in your personal journey

Whether your goal is a small step or a bold leap, this award is here to help you move forward.

 

What We’re Looking For

 

Strong applications will:

• Clearly describe the experience or opportunity you want to pursue
• Explain why it matters to you personally
• Outline how the award will help you overcome challenges or barriers
• Show how the experience will contribute to your growth, confidence, or wellbeing

 

The Heart of the Award

 

Gareth’s Memorial Award is not just financial support – it is an investment in your potential. It is designed to help you take that first step toward something new, exciting, or transformative.

If you have an idea that inspires you, challenges you, or helps you grow, we warmly encourage you to apply.

 

APPLICATIONS NOW CLOSED

 

 

A clinical trial which has recently been published has found that some osteoporosis treatments do not reduce fractures in adults with Osteogenesis Imperfecta (OI) .

The TOPaZ trial, led by Professor Ralston, involved 350 adults across 27 UK and European centres and compared standard care with teriparatide followed by zoledronate. This is the first and largest trial in adults with OI. While the treatment improved bone density, it did not reduce fracture rates, including spinal fractures.

 

Trial Updates – Medical Advisory Board

 

The BBS Medical Advisory Board has reviewed the findings and confirmed they have important implications for those living with OI.  They have produced a document detailing the new findings and what this means for both children and adults. You can download this document here.

Professor Stuart Ralston, who led the study, from the University of Edinburgh’s Institute of Genetics and Cancer, said: “The results of this study will fundamentally change clinical practice with regard to the treatment of osteogenesis imperfecta. We have been using drugs to increase bone density for decades in the hope that they might prevent fractures but the TOPAZ trial clearly shows that these medicines simply do not work in adults. We now need to focus efforts on finding new drugs that can target the defects in bone collagen to improve the strength of bone and reduce fracture risk in this rare but serious disease.”

Patricia Osborne, CEO of Brittle Bone Society Said – “We are proud to have supported the TOPaZ trial. The results have given patients and clinicians clear evidence to guide treatment decisions and highlights the importance of OI‑specific research. This study also shows the vital role that charity‑supported research plays in challenging assumptions and ensuring people with OI receive care based on robust evidence. By bringing together the largest group of adults with OI studied to date, TOPaZ sets a new benchmark and will directly influence how future trials are designed and delivered.”

 

More information about the Trial

 

You can watch Professor Ralston’s talk on the TOPaZ Trial Results from our 2026 Mini Conference in Athlone here.

You can read the University of Edinburgh’s press release on the TOPaZ results here.

 

It was great to see Max Edney featured on Channel Four last Friday during Chris Evans’ TFI Unplugged. Max was introduced as the programme’s first ‘Star of the Week’ and spoke with Chris about his experience of living with Osteogenesis Imperfecta (OI), providing viewers with a clear and personal perspective on the condition.

During the interview, Max also discussed his fundraising efforts over the past year, during which he raised more than £140,000 for the Brittle Bone Society (BBS).

Earlier that day, Max appeared alongside his parents, Steve and Leanne, and his younger brother Cove on Chris Evans’ Virgin Radio breakfast show. The family spoke about their experiences, helping to further raise awareness of OI and the work of the BBS.

We would like to thank the Edney family for highlighting Osteogenesis Imperfecta and the role of the Brittle Bone Society on national platforms. Their contribution to increasing awareness and understanding of the condition is greatly appreciated.

Our CEO Patricia was delighted to attend new All-Party Parliamentary Group (APPG) for Wheelchair Users at the House of Commons. This photo pictured shows Justin Jesudas of International Society of Wheelchair Professionals (ISWP) alongside Wheelchair Alliance CEO Nick Goldup who extended the invitation to BBS and Spinal Surgeon Mr Evan Davies.

There were some amazing speakers and everyone in attendance agreed that wheelchair provision is not only about equipment. Its about all aspects of everyday independence.

There was a unanimous sense of urgency regarding consistency of provision of access and calls for the wider community to help with gathering data. Brittle Bone Society (BBS) who have been assisting people with OI all over the UK to obtain the ‘right wheelchair for over 50 years’ were honoured to be involved and look forward to working with the Wheelchair Alliance.