Registered Office: Grant-Paterson House, 30 Guthrie Street, Dundee, DD1 5BS
Brittle Bone Society (BBS)
Annual Review 2025/26 Find the BBS at: 01382 204446
@brittlebonesociety
www.brittlebone.org
@brittlebonesociety
admin@brittlebone.org
@brittlebonesociety
Medical Advisory Board Contents Chairman and Chief Executive Statement.................... 3 About Us................................................................ 5 Events.................................................................... 6 What You Need to Know About my OI....................... 7 Engagement with NHS Healthcare Professionals and Integration of Lived Experience................................. 8 Scientific Advisory Board and Research Activities....... 9 Media and Awareness Raising..................................10 Wheelchairs and Equipment.................................... 11 Enquiries & Direct Support..................................... 12 BBS Activity Map.................................................... 13 Collaboration.........................................................15 Kids Area.............................................................. 16 Fundraising........................................................... 17 Financial Statement................................................ 18 Treasurers Report.................................................. 19 Thanks to our Supporters........................................ 20
Prof Kassim Javaid (Chairman)
Dr Paul Arundel
Prof Meena Balasubramanian
Prof Adrian Gardner
Dr Catherine DeVile
Dr Judith Bubbear
Mr Mark Heathfield
Prof Raj Padidela
Consultant Adult Rheumatologist University of Oxford
Paediatric Consultant in Metabolic Bone Disease Sheffield Children’s Hospital
Clinical Geneticist Northern General Hospital, Sheffield
Spinal Surgeon Birmingham Children’s Hospital
Consultant in Paediatric Neurology & Neurodisability Great Ormond Street Hospital Specialist Nurse Great Ormond Street Hospital
Consultant in Paediatric Endocrinology Royal Manchester Children’s Hospital
Prof Neil Gittoes
Dr Vrinda Saraff
Consultant Endocrinologist Queen Elizabeth Hospital, Birmingham
Consultant Paediatric Endocrinologist
Sally Harris
Lisa Mills
Layperson
Occupational Therapist British Royal Hospital for Children
Emilie Hupin
Specialist paediatric physiotherapist Great Ormond Street Hospital for Children
Prof Susan Parekh
Consultant Paediatric Dentist Great Ormond Street Hospital
Governance and Operational Staff Board of Trustees Chairman: Elaine Healey Vice Chairman: John Phillips Treasurer: Robert Gordon Secretary: Angie Stewart Trustees: Prof Nick Bishop, Yvonne Grant, Prof Margaret Smith OBE, Thines Ganeshamoorthy, Elizabeth Oberle Robertson, Dom Hyams, Samantha Renke and Joanna Cannon, Prof Faisal Ahmed Staff Chief Executive: Patricia Osborne Support Development Officer: Coreen Kelday Communications Officer: Caroline Chapman Auditors: BK Plus, Chartered Accountants, 144 Nethergate, Dundee, DD1 4EB
Consultant Rheumatologist Royal National Orthopaedic Hospital, London
Dr Toby Candler
Consultant Paediatric Physiotherapist Bristol Royal Hospital for Children
Prof Jennifer Walsh
Consultant Physician Northern General Hospital, Sheffield
Dr Helen McDevitt
Consultant Neonatologist and paediatrician Royal Hospital for Children, Glasgow
Prof Rachel Crowley
Consultant Endocrinologist St. Vincent’s University Hospital, Dublin
Scientific Advisory Board Prof Richard Keen (Chairman)
Consultant in Metabolic Bone Disease University of Oxford
Dr Vrinda Saraff
Consultant Paediatric Endocrinologist Birmingham Children’s Hospital
Prof Nick Bishop
Paediatric Consultant Trustee of Brittle Bone Society (BBS) Sheffield Children’s Hospital
Prof Stuart Ralston
Professor of Rheumatology Centre of Genomic and Experimental Medicine, University of Edinburgh; Western General Hospital Edinburgh
Penny Clapcott Layperson
Message from Chairman, Elaine Healey Trustees
Awards & Projects
My Trustees/Directors continue to do great work for the BBS. Robert Gordon our Treasurer was re-elected in July 2025 alongside Thines Ganeshamoorthy, Liz Robertson and Prof. Margaret Smith. The breadth of knowledge serving on our Board is marvellous, ranging across legal, accounting, healthcare and business and we continue to ensure lived experience is strongly represented within our programme of work throughout the year.
The Gareth Cumming Adventure Memorial Award is due to enter its third year, we paused the programme in 2025 appealing for applicants to submit their entries. The Touch a life legacy (Nursing) award at the University of Dundee made its fourth appearance celebrating the life of the late Margaret Grant MBE and BBS worked hard on our vital partnership with the NHS Rare Disease Collaborative Network, supporting improvement in care for adults with OI.
Staff & Performance The BBS team led by our CEO alongside two members of staff, our SDO and Comms Officer have presented another year of strong performance through our activity and events. Our Family Fun Day events, OI CAN and VOICE remained on our programme and in 2025 we held a spectacular 3 day conference in Dundee preceded by a fundraising walk – Medics on the March. We thank all of our friends from the OIF in the USA who travelled to join us in this fun walk along the East coast of Scotland route with NHS medics from across the UK, raising awareness and funds. Communications are performing strongly with our figures for wishbone day smashing all our targets with over 350,000 views. Support remains key to our work in terms of endorsed health information and wheelchair provision. The Motability grant funding ceased in November 2025 and as this goes to print we aren’t yet clear if we might rely on this strand of funding going forward.
What You Need to Know About My OI BBS continue to visit places of learning to speak with Healthcare students to talk about OI and members have accompanied staff to give real testimony to living with the condition. We continue to build links with physiotherapists, occupational therapists, orthopaedic surgery and paramedics, with renewed energy into areas of dentistry and still retain our hopes to expand the projects reach into England.
Published Papers We were involved with a Dental Paper recently published and look forward to the paper on Independent living also being published. You may not yet have required to contact us for support but if that changes please don’t hesitate to get in touch.
Message from Chief Executive, Patricia Osborne BBS Events We held a Parliamentary Roundtable meeting at Houses of Parliament in March chaired by Lord Shinkwin and Baroness Curran. Luke Murphy MP also attended alongside other elected members. The full delegation roll-call can be seen in the pictures in this review. The event was to raise awareness around equity of care and a review of our Patient Charter. Our AGM in Dundee was a big success covering science and research with regular features around support and our ever popular peoples panel. We also showcased our links with LAMDA on our hopes to help ensure children’s time in hospital is made as bearable and pleasant as possible. OI Can in Exmoor was a runaway success, well attended with fun and confidence building exercises for all the family. The Family Fun day in Cardiff, first beset by bad weather, was finally rescheduled and held in January. In the spring, VOICE brought young people together for another meeting in Blackpool, providing an additional opportunity to build peer support networks. BBS Online Events We launched a series of webinars on women’s health and dentistry. This area of work is set to grow and develop as more people find it convenient to dial into meetings and presentations.
Medical and Scientific Advisory Boards, Association of Medical Research Charities (AMRC) We remain grateful for the hard work of our Medical and Scientific Boards – covering our resources and steering our research program. Our Impact Reports highlight the difference our support has made to research in the OI field. We completed the AMRC five yearly audit – which demands very strict criteria to ensure charities can satisfy their tight governance. All of our resources are periodically reviewed and updated. We contributed to a published paper in dental care and completion of care pathways continues. BBS were also responsible for liaising with others to help craft a Dental Paper on ‘oral care’ which was published in May 2025. Highly Specialised Services (HSS) Annual Meetings Our report was delivered to the annual HSS meeting last year kindly hosted by Jones Day to support the GOSH programme led by Dr Catherine DeVile. Our CEO delivered our now regular annual BBS presentation to representatives from all the NHS reps in attendance. NHS Rare Disease Collaborative Network The third meeting of the NHS RDCN (for Adult Bone Health) was hosted and held at Metabolic Support’s venue Birmingham. BBS staff consist of the secretariat for this project and there are now 23 hospitals signed up to be a part of the collaborative initiative.
Motability Foundation We submitted a follow up request. We confirm demand continues to rise, wheelchair costs have not come down in price and so we continue to need to seek out additional funds to supplement equipment costs. The outcome is not yet known. Income and Fundraising Income streams remains a priority. We thank everyone who has stepped up this past financial year. We remain extremely grateful to those who have kindly left legacies to the BBS. We once again appeal to our members to consider fundraising no matter how small. Our thanks as ever to our long term Trust funders like the Northwood Trust (you can see the full list of support at the back of this document).
What is Osteogenesis Imperfecta?
Our Vision – Quality of Life
Osteogenesis Imperfecta is a genetic bone condition characterised by fragile bones that break easily. OI is caused by a genetic mutation that affects the body’s production of collagen; which can be found throughout the body. As well as frequent fractured bones, people with OI often have muscle weakness, hearing loss, fatigue, curved bones, scoliosis, blue sclera, brittle teeth and short stature. OI has a wide range of severities and can affect people in many different ways.
Our vision is that those born with OI can achieve the best quality of life whilst living with this genetic condition.
How We Work
Our Charitable Aims To improve opportunities for children, young people and adults with OI to take charge of their own health. To increase the level of independence of children, young people and adults with OI. To decrease the levels of isolation felt by children, young people and adults with OI. Filling the Gaps The Brittle Bone Society never forgets it was formed to fill a gap, to provide support to individuals and families, to raise awareness of this rare condition within the Healthcare setting and wider public and to be advocates for improved treatment and services for the OI Community.
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We consult with our members, of all ages We support our NHS healthcare professionals, and recognise their success We ensure fair representation of lay personnel on relevant committees and forums We encourage learning, through introduction of our research grants programme and medical symposiums, sharing news on new breakthrough treatments and striving for better care.
Events Throughout 2025/26, the Brittle Bone Society delivered a varied programme of events, bringing together members of the OI community, healthcare professionals, and researchers from across the UK and beyond.
Annual Conference & AGM A key highlight of the year was our threeday event in Dundee, which welcomed over 200 delegates from across the world, demonstrating the continued reach and influence of the charity. Day One featured a dedicated Scientific Symposium, bringing together healthcare professionals to explore the latest developments in OI research and clinical care. Day Two focused on Research and Lived Experience, combining academic insight with powerful personal stories, ensuring that realworld experiences remained central to future progress. Day Three hosted our Annual Conference and AGM, providing an opportunity for networking, discussion, and shared learning across the community.
Online Webinars Alongside our in-person programme, we also introduced the first in a new series of online webinars, expanding accessibility for those unable to attend in person events. The first of these focused on Women’s Health, addressing an important and often underrepresented topic within the OI community.
Other events held across the UK We hosted an outdoor residential event at the Calvert Trust, Exmoor in October 2025, bringing together 30 delegates in a relaxed and supportive environment. Our Family Fun Day in Cardiff, attended by 55 delegates, marked an important milestone as our first event in Wales, strengthening relationships with families in the region. We delivered a Youth Event in Blackpool in April 2025, providing young people with OI an opportunity to connect, share experiences, and build confidence within a supportive peer network. Looking ahead, we will continue to build on this momentum—expanding our geographical reach, increasing accessibility through digital delivery, and ensuring that our events programme continues to reflect the needs and voices of our community.
What You Need to Know About My OI Our outreach work continues to play a vital role in raising awareness of OI and improving understanding among future healthcare professionals. 2025/26 Programme Highlights Throughout 2025/26, we continued our engagement with universities by bringing members directly into educational settings, enabling students to hear first-hand experiences of living with OI. This approach ensures learning goes beyond clinical theory, fostering greater empathy, awareness, and confidence in supporting individuals with rare conditions.
University of Dundee – Dental Teaching Hospital Our History Bones archives held by the University of Dundee continues to be a useful resource for students and has been accessed by a variety of disciplines throughout the year from arts in medicine to global health students and community groups. In addition, we maintained our valued collaboration with LAMDA (London Academy of Music and Dramatic Arts) contributing to creative approaches that help communicate the realities of living with OI to wider audiences.
We delivered sessions across a range of institutions, including paramedic courses in Edinburgh, Stirling, and Glasgow, where students explored the practical and psychosocial aspects of supporting individuals with OI in emergency care settings. We also continued our engagement with Occupational Therapy students, supporting their understanding of independence, mobility, and daily living challenges.
Our ongoing collaboration with the University of Dundee Dental School remains a key part of this programme. By working closely with dental students, we are helping to increase awareness of the specific oral health challenges associated with OI, ensuring future dentists are better equipped to provide informed and sensitive care.
Thank you to everyone who has taken part in this project. These include Fiona Holmes, David Queen, Steven Hastings, Jamie Abbott, Yvonne Grant, Will Cannon and Mark Ross. Looking ahead to 2026, we will continue to expand this programme, reaching new universities and disciplines, and ensuring that lived experience remains at the heart of healthcare education.
Engagement with NHS Healthcare Professionals and Integration of Lived Experience The BBS continues to maintain strong, collaborative relationships with NHS healthcare professionals, ensuring that both clinical expertise and lived experience shape all aspects of our work. These partnerships directly enhance the quality, reach, and impact of our services, enabling us to deliver accurate information, responsive support, and informed advocacy to the OI community. Medical Advisory Board (MAB) Our Chief Executive Officer plays an active role in the MAB, chaired by Professor Kassim Javaid. The Board provides robust clinical oversight, ensuring that 100% of our healthrelated content is reviewed against current clinical best practice. This has resulted in consistently high levels of trust in BBS resources among patients, families, and healthcare professionals. Through active participation in NHS Annual Rare Bone Disease meetings across Sheffield, Birmingham, London, and Bristol, BBS remains directly connected to national service developments. This engagement enables us to represent patient perspectives at a national level and ensures our programmes remain aligned with NHS priorities, contributing to improved coordination of care and awareness of patient needs.
POINT BBS works in close partnership with the Paediatric Osteogenesis Imperfecta National Team (POINT), a network of Allied Health Professionals (AHPs) from leading children’s hospitals across the UK. Our Support Development Officer (SDO) attends all POINT meetings, ensuring consistent two-way communication between AHPs and the OI community. This has strengthened the translation of clinical knowledge into accessible guidance, while ensuring that patient feedback informs service discussions and improvements at a national level.
Driving Impact Through Shared Expertise Through collaboration with the MAB and POINT network, BBS regularly reviews and updates factsheets. Over the past year, this has supported the ongoing development and refinement of key patient resources, including care pathways, ensuring all our resources are clinically robust and relevant to real-life experiences. Healthcare professionals continue to provide direct support to BBS through: Responding to patient enquiries, improving the accuracy and timeliness of advice Supporting equipment applications, helping individuals access appropriate aids more efficiently Delivering expert-led sessions at BBS events, increasing understanding of treatment, care, and research Collectively, this input has enhanced the quality of information reaching our community and strengthened the connection between clinical services and patient support, contributing to more informed decision-making among individuals and families.
Scientific Advisory Board (SAB) and Research Activities The BBS continues to demonstrate unwavering commitment to advancing research into OI. Our SAB, chaired by Prof Richard Keen, plays a crucial role in guiding our research strategy and ensuring scientific rigour in all projects we support or endorse.
Ongoing Research Commitment BBS continue to champion pioneering research to find new treatments, improve diagnosis and aid a better understanding of OI. Our approach to supporting research is multifaceted, including: Direct funding of research projects Conducting and publishing surveys Disseminating updates on clinical trials Maintaining a regularly updated website to inform both the OI community and healthcare professionals
BBS Research Grants The research designated fund stood at £115,000 at the start of the year and the Trustees had earmarked £60,000 towards Research projects for 2025. We funded 2 projects from the 2025 call, utilising £45,000 of these funds: Correcting Collagen synthesis and Secretion: A new precision therapy for Osteogenesis Imperfecta Fracture prediction in Osteogenesis Imperfecta using Danish health registers and clinical data – the untended needs study These studies aim to generate meaningful insights that could significantly benefit individuals living with OI.
BBS-Led Research and Publications
Clinical Trials
BBS continues to conduct its own research, engaging directly with our membership base. Highlights include: Our 2023 publication on "Patient-Reported Experiences of Clinical Care of OI During the COVID-19 Pandemic" has received 2500 views, 1200 downloads. In November 2024, we were pleased to have our paper titled "Perceived Dental Care Needs accepted for publication. We have another two papers “Effect of disease severity on independent living in individuals with Osteogenesis Imperfecta (OI)” and, “Best practice management recommendations for adults with severe Osteogenesis Imperfecta (OI), including type III OI” which have been submitted for publication and we are awaiting the outcome. We are nearing completion for the paper on “Best practice management recommendations for adults with mild Osteogenesis Imperfecta”. We ensure our members are actively involved in survey design and writing groups for these studies.
We continue to monitor and support awareness of key clinical trials in the OI field:
Collaboration with Students and Researchers BBS receives numerous enquiries from students at various academic levels, from undergraduates to PhD candidates, seeking input or collaboration on OI-related projects. Each request is reviewed and considered by our Scientific Advisory Board to ensure alignment with our mission and research standards.
TOPaZ Trial (NIHR-funded): 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. You can read the MAB full statement on the trial results here. ORBIT and COSMIC Studies (Ultragenyx/Mereo Biopharma): results from these Phase 3 trials of setrusumab for children with OI, reported that neither study met its primary endpoint of reducing fracture rates compared with placebo or standard bisphosphonate treatment. However, both trials demonstrated statistically significant improvements in bone mineral density, although these gains did not translate into meaningful reductions in fractures. While the treatment showed a consistent safety profile and some encouraging signals in younger patients, the companies described the results as disappointing and is conducting further analyses to determine next steps.
Media and Awareness Raising We continue to raise awareness of OI through our communications and utilisation of media. From our website to social media platforms, we are consistently uploading and creating content that educates, raises awareness and champions OI. This year, we continued to grow our social media platforms on Facebook, Instagram, TikTok, YouTube and LinkedIn with 10,000 followers across these platforms. Also, we launched successful campaigns across these. Our mailing list saw a revamp to more frequent newsletters being sent out to over 5,000 recipients.
Wishbone Day Campaign Wishbone Day is the international awareness day for OI, and it falls on the 6th of May every year. It is a day for education, sharing stories and raising awareness. This year, our Wishbone Day social media content reached over 110,500 people across Facebook and Instagram. The posts were shared over 1,600 times and received over 2,000 likes on Facebook and Instagram.
Rare Disease Day Campaign Rare Disease Day is an international awareness day for rare disease, and it falls on 28th of February (or 29th on a leap year). Every year, we use this as an opportunity to raise awareness of OI on our platforms. Across Facebook and Instagram, our content on Rare Disease Day received over 81,500 views.
Wheelchairs and Equipment Wheelchairs
Equipment
Access to the right equipment remains transformational for individuals living with OI, enabling greater independence, improved mobility, and enhanced quality of life. In 2025/26, the Brittle Bone Society supported the provision of 17 specialised wheelchairs totalling £85,300. Each chair is tailored to individual need, helping users to participate more fully in daily life, education, employment, and social activities. Our Motability Foundation grant, which played a significant role in supporting this programme, came to an end in November 2025. While this funding made a substantial impact over its duration, the need for specialist equipment continues to grow, and securing sustainable funding remains a key priority moving forward.
In addition to wheelchairs, we also provided a range of essential equipment, including trikes, specialist prams, and car seats. These items are particularly important for children and families, ensuring safe positioning, mobility, and transport from an early age, while reducing financial pressures at critical times. Through this work, we continue to address gaps in provision, ensuring that individuals and families affected by OI have access to the equipment they need to live as independently and confidently as possible. Looking ahead to 2026, we will focus on strengthening funding pathways and expanding our equipment provision programme to meet rising demand and ensure no one is left without the support they need.
“Having this wheelchair essentially means having my life back. No more picking and choosing about what I can and can't do. No more saying no to my friends of trips and adventures. No more worrying about when the chair is going to stop and breakdown.” “I am now able to visit my local shopping centre with a friend and browse the shops at my own pace, rather than simply being pushed past things I would have liked to see. It has also reduced the physical strain on my husband, and I feel less guilty as he no longer has to push me all the time. Most importantly, I have been able to enjoy outings with my grandchildren again, such as trips to the park—something I haven’t been able to do for several years. Previously, pain and limited mobility meant I had to stop frequently, and it was too difficult for my husband to both push me and keep up with the children. The wheelchair has helped me re gain these important family moments.”
Enquiries & Direct Support Providing accessible, responsive support remains at the heart of the Brittle Bone Society’s work.
Enquiries During 2025/26, we responded to 185 individual enquiries, offering tailored guidance, reassurance, and practical information to individuals, families, and professionals across the UK and beyond. These enquiries reflect the wide-ranging challenges faced by those living with OI and highlight the continued need for trusted, specialist support. The majority of enquiries came from adults living with OI (101), alongside parents and carers (50) and healthcare or other professionals (22), demonstrating the breadth of our reach and the importance of providing support across all stages of life.
Method Email remained the primary method of contact (135 enquiries), followed by telephone (44) and social media channels, ensuring individuals could access support in a way that works best for them.
Types of Enquiries Enquiries covered a diverse range of topics, with the highest demand relating to: Funding and equipment support Benefits and entitlements Equipment needs General medical queries and specialist advice Hearing, dental and vision concerns We also provided support on issues such as education, peer support, orthopaedic surgery, travel, and diagnosis - demonstrating the complex and often interconnected needs of the OI community. Our role as a first point of contact is critical - connecting people to the right services, providing reassurance, and ensuring no one feels isolated in navigating life with OI. Looking ahead, we will continue to strengthen this frontline service, improving accessibility and responsiveness while ensuring every enquiry is met with informed, compassionate support.
‘’Having someone who understands made all the difference. We felt supported, listened to, and guided in a way that gave us confidence to move forward.” ‘’BBS has been a fantastic resource… and shows that there is a village of support out there.”
BBS Activity (April - July 2025)
Walk, Wheels and Wanders Fundraising Campaign
Apr
Apr
VOICE Youth Event
May
Visit From Dental Students- What You Need To Know About My OI
May
Research Grants Open
Jun
Jul
Jul
BBS Annual Family Conference
Jul BBS Scientific Symposium Medics On The March
BBS Attend Annual HSS Meeting
BBS Activity (October 2025 - March 2026)
Oct
OI Can Outdoor Event
Nov
Nov
Visit OT Students What you need to know about my OI
Touch A Life Award Mar
BBS Delegation visit House of Lords Roundtable on Care
Mar
Dec Jan Launch Of Women’s Health Webinars Visit Paramedic Students - What you need to know about my OI
Jan Working with London Academy Of Music & Dramatic Arts
Cardiff Family Fun Day
Special Project - NHS Rare Disease Collaborative Network The BBS continues to play an active and influential role in supporting and strengthening NHS services for individuals living with Osteogenesis Imperfecta. BBS continues to play a central role as Secretariat for the Rare Disease Collaborative Network (RDCN) for Adult Rare Bone. Through this work, we support coordination, communication, and the ongoing development of the network, helping to strengthen collaboration across NHS services. The RDCN plays a critical role in improving care pathways, reducing variation in service provision, and ensuring more equitable access to specialist expertise for individuals with rare bone conditions. November 2025 saw the RDCN community come together for an annual meeting held by Metabolic Support whom the BBS work alongside in delivering this important project. The meeting had a greater emphasis on patient involvement, and the workshops delivered important milestones to take the RDCN forward towards the next steps, which include quality of life checklists and muchneeded patient care plans. Looking ahead to 2026, we will continue to build on these strong relationships, advocating for improved services, greater coordination, and better outcomes for all those affected by OI. Together, these partnerships ensure that clinical expertise, strategic influence, and lived experience remain fully integrated, supporting ongoing improvements in care, treatment, and outcomes for the OI community.
“BBS support this special project that sees patients take an active role in designing their healthcare alongside healthcare professionals.”
Kids’ Area The BBS continues to provide vital support to children living with OI, creating safe, inclusive spaces where they can have fun, build friendships and feel understood. Through our Kids Club and Family Fun Days, children build friendships and confidence in a supervised environment, while parents and carers benefit from valuable respite.
Spreading Joy and Belonging
Supporting Children Through Hospital Care
A Lasting Impact
For many children with OI, hospital visits are frequent and emotionally challenging. This year, BBS provided 49 Hospital Kids Packs, offering comfort, distraction, and reassurance during treatment. These packs help reduce anxiety and create more positive healthcare experiences— while also introducing new families to BBS, with 44% of recipients not previously engaged.
Across all programmes, BBS delivers a powerful combination of: Emotional support Practical help Community connection These initiatives show that even small, thoughtful interventions can have a lasting impact—helping children and families feel seen, supported, and not alone.
The Christmas Selection Box programme reached 75 children with OI and their siblings, delivering emotional uplift and recognition at a time when many families are facing ongoing medical and financial pressures. By recognising siblings alongside children with OI, BBS ensures every child feels valued and included.
“Meeting other families… reminds him he isn’t alone.” “He struggles with cannulas… the pack really helps him cope.” “Receiving a gift really put a smile back on her face.” “It reminds him that he’s not alone.” “Having BBS at the end of the phone… is very reassuring.”
Thanks to our Fundraisers We would like to extend our heartfelt thanks to everyone who supported the Brittle Bone Society through fundraising during the financial year. While we are unable to mention every individual contribution, we are delighted to highlight just a few of the amazing efforts that made a real difference.
Medics on the March A team of UK and US medics undertook an incredible three-day walk from Kirkcaldy to Dundee to raise both awareness and funds for OI. Covering more than 60 miles, their journey took them through Kirkcaldy, Elie, St Andrews and Dundee, finishing at our Dundee 2025 Conference.
Wheels, Walks and Wanders – May Campaign In May, supporters took to their bikes, walking shoes, swimming pools, and wheelchairs to complete 31 miles over 31 days. This creative and inclusive challenge raised £2,500 and also helped increase awareness of OI.
Their efforts raised an outstanding £6,489 (including Gift Aid) — a fantastic achievement.
Charity of the Year Partnerships We were honoured to be selected as Charity of the Year by several organisations: North Elmham Young Farmers, who raised £6,000 The Scottish Antique and Arts Centre, who contributed £1,730
Glasgow Kiltwalk Susan, alongside her friends and colleagues, completed the 23-mile Glasgow Kiltwalk, raising over £2,500 (including Gift Aid). Susan’s son, Adam, was diagnosed with OI at the age of five. Despite the challenges of frequent fractures and related complications, Adam continues to approach life with remarkable determination and joy. BBS have been proud to support Adam and his family throughout their journey. Thank you to Susan and her team for truly going the extra mile.
Cathrene’s Edinburgh Marathon
On 25 May 2025, Cathrene took on the Edinburgh Marathon. Motivated by her firsthand understanding of the impact of OI, she ran on behalf of those who are unable to do so themselves. Her determination and commitment reflect the spirit of our community, and her efforts have helped raise both funds and awareness for individuals and families affected by OI.
Androulla’s Great North Run
On 7 September 2025, Androulla completed the Great North Run half marathon, raising £1,535 plus Gift Aid. Inspired by her two sisters, who both have OI, Androulla’s achievement is a powerful example of personal dedication and support for loved ones.
In addition, the team at Vero HR celebrated their 20th anniversary by setting themselves a remarkable challenge: to walk a combined 20,000 miles. Their efforts raised £875 in support of the Brittle Bone Society.
Every fundraiser, challenge, and contribution—large or small— helps us continue our vital work supporting individuals and families affected by OI. We are truly grateful to everyone who has supported us this year.
Financial Statement
Treasurer’s Report Income Income for the year amounted to £428,003 (£598,531 in 2025). We received legacy funding during 2025 as we have in the previous few years. The charity does however still have a good variety of other income strands, with donations from individuals, trusts, and pharmaceutical companies as well as fundraising income raised by members and supporters of the charity. The outcome of the disappointing results of the Setrusumab drug from Ultragenyx has resulted in a loss of pharma grant income. However we still recieve pharma grants, from Mereo and Kyowa Kirin. The Charity have noticed an uptick in other pharma operatives contacting the BBS with whom the Charity have had no prior contact with. An application for a three-year funding package of £100,000 per annum towards wheelchairs had been successful with Motability Foundation in 2022 and this continues to help finance several wheelchairs. The charity re-applied in November of 2025 but the Motability grants programme has been delayed and the outcome of this will not be known until late summer 2026. This represents a significant grant award of circa £100k per annum.
We look to cover the cost of events from outside sources, allowing us to increase the spread of services offered by the charity's own resources. The charity continues to explore and apply to various funding institutions and continues to seek out relevant sponsorship to boost its designated and restricted funds.
Expenditure As a small-medium sized charity with limited resources we ensure that all donations are spent as efficiently and effectively as possible. The new ways of working introduced via necessity during the pandemic highlighted many cost efficiencies for holding meetings and contact with our members, most of which have continued. The cost of venue hires and hiring AV equipment has increased substantially since the pandemic, and we continue to see that in our outgoings for face-toface events. It’s been agreed to host a large AGM Conference event each alternative year with the intervening years hosting smaller / one day gatherings to keep costs to a minimum. The Cost of utilities has also increased.
Financial Review The financial statements show that the charity reported a surplus of £11,990 for the year. Total income for the year was £428,003 (2025 £598,531). Expenditure for the year was £396,612 (2025 - £405,202). The charity's net asset position has increased in the year with fund balances of £701,827 being reported at the year-end (2025; £689,837). Unrestricted funds total £567,650 and of this the trustees have designated £200,00 specifically for wheelchairs and research funding. The trustees are satisfied with the financial position of the society and look forward to continuing the charity's activities with the security of sound finances.
Thanks to our Supporters We extend our heartfelt gratitude to all the volunteers and committee members who have so generously shared their time, skills, and dedication with us. We also sincerely thank our members, supporters, fundraisers, corporate partners, charitable trusts and foundations, event participants, runners, and those who have chosen to remember the Charity in their wills. While it’s not possible to name everyone who has contributed to our mission during 2025/26, please know that we deeply appreciate your continued support and the special contributions so many of you have made. In addition to our dedicated community, we are also thankful for the generous support of numerous companies and charitable organisations, both in the UK and around the world, whose contributions are making a meaningful difference across every area of our work.
Trusts and Grant Making Institutions GM Morrison Charitable Trust Hospital Saturday Fund JTH Charitable Trust Motability Foundation Northwood Charitable Trust PF Charitable Trust Sussex Community Foundation William S Phillips Charitable Trust Industry Jones Day Gordon Consultancy Kyowa Kirin Mereo Biopharma Ultragenyx
Find the BBS at: 01382 204446
@brittlebonesociety
www.brittlebone.org
@brittlebonesociety
admin@brittlebone.org
@brittlebonesociety
Registered Office: Grant-Paterson House, 30 Guthrie Street, Dundee, DD1 5BS
Brittle Bone Society (BBS), a registered charity (SCO50854) and company limited by guarantee (SC677346). Supporting the OI community throughout the United Kingdom and in Ireland.