2026 London Conference Programme (8)

Brittle Bone Society (BBS)

2026 Annual Family Conference & AGM Saturday 8 August | Jones Day, London

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.

Welcome to our 2026 Conference Greetings from Patricia Welcome to Jones Day London for this year’s Annual Conference and AGM. Bringing together individuals and families living with Osteogenesis Imperfecta (OI), healthcare professionals, researchers, and supporters from across the UK and Ireland, today is an opportunity to learn, connect and strengthen the community at the heart of everything we do.

Today is about more than sharing knowledge.

It is a chance to meet with others who understand the challenges and achievements of living with OI. Whether you are newly diagnosed, a long-standing member of our community, a family member or a healthcare professional, we hope you will find the day informative, supportive and memorable.

We have a great line-up of speakers from a range of institutions, including Great Ormond Street Hospital, London Academy of Music and Dramatic Arts, Royal National Orthopaedic Hospital, Eastman Dental Hospital, University of Edinburgh and University of Sheffield.

We extend our sincere thanks to all our speakers, volunteers, trustees, staff, supporters and attendees. Together, we continue to build a stronger, more informed OI community.

Throughout the day, you will hear the latest developments in OI care, research and treatment.

Our programme includes presentations on paediatric care, dental health, clinical trials and research, alongside opportunities for discussion and questions with our expert speakers.

We hope you enjoy the conference and leave with new knowledge, valuable connections and a renewed sense of community.

This afternoon, members will hear updates on the charity’s work, future plans and strategic priorities during our AGM, before we conclude with lived experience presentations from members of the OI community, whose stories continue to inform and inspire our work.

Brittle Bone Society Staff

Coreen Kelday

Support Development Officer

Caroline Chapman

BBS would also like to thank all involved in assisting us for this year’s event, especially Emily, who has been working part-time at BBS HQ, helping us with the preparation and delivery of Conference!

Communications Officer

Thank you to our sponsors:

Patricia Osborne Chief Executive

Post about our 2026 conference on social media!

Use our hashtag & tag us in your posts! #BBSAnnualConference2026

@brittlebonesociety @brittlebonesociety @brittleboneUK @brittlebonesociety

@brittlebonesociety

Conference Agenda 9:30 - 10:00

Registration

10:00 - 10:05

Welcome and BBS Update

Patricia Osborne | CEO, Brittle Bone Society (BBS) 10:05 - 10:10

Digital Interaction Introduction

Stephen Ryan | Managing Director, Narration

Session One

Session Chair: Prof Nick Bishop 10:10 - 10:30

International Care in Paediatric OI

Dr Catherine DeVile | Consultant Paediatric Neurologist, Great Ormond Street Hospital Dr Belinda Crowe | Consultant in Paediatric Neurodisability, Great Ormond Street Hospital 10:30 - 10:40

Arts, Health, Puppetry & Musical Theatre: LAMDA x Brittle Bone Society

Dr Louisa Petts | Research, Impact and Innovation Officer, London Academy of Music and Dramatic Arts 10:40 - 10:50

Beyond the Trial: How New Therapies Reach Adults with OI

Prof Richard Keen | Consultant Rheumatologist, Royal National Orthopaedic Hospital 10:50 - 11:10

How OI Can Affect Your Teeth

Miss Jasmine May Cachia Mintoff | Consultant in Paediatric Dentistry, Royal National Ear, Nose & Throat and Eastman Dental Hospitals Miss Fatimah Alsayer | Consultant, Honorary Clinical Associate Professor in Special Care Dentistry and Clinical Director for Medicine, Royal National ENT and Eastman Dental Hospitals

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@BrittleBoneUK

11:10 - 11:20

11:20 - 11:40

Q&A Mentimeter Session

(Moderated by Prof Nick Bishop)

Coffee Break

Session Two

Session Chair: Prof Richard Keen 11:40 - 11:55

Research Updates: Clinical Trials in Osteogenesis Imperfecta Prof Stuart Ralston | Professor of Rheumatology, University of Edinburgh 11:55 - 12:05

Update on Clinical Trials in Children and Progress Report on the MOI-A Study Prof Nick Bishop | Professor of Paediatric Bone Disease, University of Sheffield 12:05 - 12:15

From Experience to Evidence: My Research Journey Inspired by Patients Sophie Barlow | Senior Physiotherapist, Royal National Orthopaedic Hospital

12:15 - 12:30

12:30 - 13:30

Q&A Mentimeter Session

(Moderated by Prof Richard Keen)

Lunch

Session Three 13:30 - 14:30

AGM

BBS Trustee Board and CEO 14:30 - 15:00

Real Lived Experience Panel and Q&A Session Moderated by Stephen Ryan Niveda Kiridaran | OI Advocate Chris Lynch | Filmmaker, Inventor and Founder Jane Errington | OI Advocate and Mother 15:00 - End

Closing Remarks

Elaine Healey | Chairman, Brittle Bone Society (BBS)

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@BrittleBoneUK

Speaker Biographies Miss Fatimah Alsayer Consultant, Honorary Clinical Associate Professor in Special Care Dentistry and Clinical Director for Medicine, Royal National ENT and Eastman Dental Hospitals Fatimah is consultant and honorary clinical associate professor in special care dentistry at the Royal National ENT and Eastman Dental Hospitals. Her role includes the treatment of medically compromised adults, adults with anxiety and or learning disability. Fatimah has worked in a range of fields including hospital and community dental services prior to being appointed at Eastman Dental Hospital, UCLH. She currently chairs the specialty advisory board for Special Care Dentistry Royal College of Surgeons Edinburgh and is an executive committee member of British Society of Special Care Dentistry.

Sophie Barlow

Senior Physiotherapist | Royal National Orthopaedic Hospital Sophie Barlow is a specialist physiotherapist with extensive experience in pain management, rehabilitation, and rare bone diseases. She graduated with a BSc (Hons) in Physiotherapy from St George's, University of London, in 2008 before completing her junior rotations at the Lister Hospital in Stevenage. In 2011, Sophie joined the Royal National Orthopaedic Hospital, where she has developed her expertise in complex musculoskeletal rehabilitation. Since specialising in pain management and rehabilitation in 2013, she has become particularly passionate about supporting adults with Osteogenesis Imperfecta and other rare bone diseases, a field in which she has worked for the past six years. Sophie is committed to understanding how pain affects every aspect of a person's life. She takes a holistic, person-centred approach, working collaboratively with patients to develop graded rehabilitation programmes that help them achieve meaningful goals and improve their quality of life. Alongside her clinical practice, Sophie is currently undertaking a National Institute for Health and Care Research (NIHR) Pre-doctoral Fellowship. Her research focuses on rehabilitation and exercise for people living with rare bone diseases, with the aim of strengthening the evidence base and improving care for this underserved population.

Professor Nick Bishop

Professor of Paediatric Bone Disease | University of Sheffield Professor Nick Bishop is an internationally recognised expert in the field of paediatric bone research. His focus is on experimental medicine/early phase studies in OI, hypophosphatasia and other forms of rickets. He has a long-standing interest in early life influences on later skeletal health. He is Associate Director of the Versus Arthritis Experimental Arthritis Treatment Centre for Children, CI for the global studies of setrusumab in children with OI, co-CI of the MOI-A study of losartan in older adolescents and adults with OI, and a trustee of the Brittle Bone Society.

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@BrittleBoneUK

Dr Belinda Crowe

Consultant in Paediatric Neurodisability, Great Ormond Street Hospital Dr Belinda Crowe has been a consultant in paediatric neurodisability with special interest in movement disorders and osteogenesis imperfecta at Great Ormond Street Hospital for Children since 2015. She feels fortunate to work in a multidisciplinary team alongside medical, therapy, nursing, psychology, social work, radiology, and orthopaedic colleagues, as part of the national Highly Specialised Paediatric Osteogenesis Imperfecta Service. She is Honorary Secretary of the British Academy of Childhood Disability and a keen supporter of the Brittle Bone Society. Belinda feels truly passionate about optimising participation and achieving best possible quality of life for children with disabilities and their families.

Dr Catherine DeVile

Consultant Paediatric Neurologist, Great Ormond Street Hospital Dr Catherine DeVile is a Paediatric Neurologist at Great Ormond Street Hospital (GOSH) and has been Lead for the Osteogenesis Imperfecta (OI) Service since her consultant appointment in 2000. She qualified in 1986 from Cambridge University and King's College Hospital London and completed subspecialist training in paediatric neurology at GOSH following a medical doctorate spanning both neurosciences and endocrinology. The OI Service at GOSH, established through the Wolfson Centre Neurodisability Service in the 1970s is one of four centres comprising the Highly Specialised OI Service for the multidisciplinary care of children and young people with severe, complex and atypical OI.

Elaine Healey

Chairman | Brittle Bone Society (BBS) As Chair of the Brittle Bone Society, Elaine has played a key role in driving significant progress for the charity and the OI community. She has overseen the establishment of the BBS Medical Advisory Board, strengthening of the research programme through AMRC membership, and oversaw the inaugural International Scientific Symposium.

She champions improved clinical care, NHS services, rare disease advocacy, and support for children, young people, and families affected by OI. Working alongside trustees and staff, she helps ensure the BBS continues to deliver vital support, research, awareness, and fundraising initiatives.

Jane Errington

OI Advocate and Mother Jane has been involved with the Brittle Bone Society for as long as she can remember, having been diagnosed with Type 1 OI as a young child. Throughout her life, she has been keen to support OI research and raise awareness of the condition, particularly among healthcare professionals and emergency department staff, where understanding of OI can make a significant difference to patient care. Jane has been a member of the RUDY patient forum for many years, contributing to research and patient involvement initiatives. Alongside her own experience of living with OI, Jane is also a mum of two, one of whom is a teenage son with OI, giving her a perspective as both a patient and a parent navigating life with brittle bones.

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@BrittleBoneUK

Professor Richard Keen

Consultant Rheumatologist | Royal National Orthopaedic Hospital Professor Keen is a consultant rheumatologist and Director of the Metabolic Bone Disease Centre at the Royal National Orthopaedic Hospital. He and his team are involved in the clinical care of patients with a wide range of bone diseases. His research interests include novel treatments for patients with bone diseases, developing care pathways and medical education. He holds a number of key national and international appointments including being current clinical lead for London's Adult Rare Bone Disease Collaborative Network, member of the NHS Clinical Reference Group for Specialised Rheumatology, and Chair of the Brittle Bone Society’s Scientific Advisory Board.

Niveda Kiridaran OI Advocate

Niveda is a Registered Associate Nutritionist (ANutr), rare disease advocate, and someone living with Osteogenesis Imperfecta (OI). She is the co-founder and co-host of South Asian Women in Rare, a podcast amplifying the voices and experiences of South Asian women in the rare disease community. Niveda is also part of the Rare Diseases International Youth Leadership Programme. In 2025, she had the opportunity to attend the 78th World Health Assembly in Geneva. Through advocacy, storytelling, and community engagement, Niveda is passionate about raising awareness, building connections, and driving positive change for people living with rare conditions.

Chris Lynch

Filmmaker, Inventor and Founder Chris Lynch is a Belfast-born, London-based filmmaker with over 20 years of experience across network TV and film. He has produced and presented BBC documentaries including In the Driving Seat (now on iPlayer) and BBC's The Disability Paradox.

Chris is the inventor of CAERUS, the world's first wheelchair-integrated professional camera system, which was widely publicised on BBC News earlier this year. The technology has already earned industry recognition for its innovation and is now being used on major BBC productions, including Antiques Roadshow. A passionate advocate for inclusion in the screen industries, Chris designs tools and opportunities that allow disabled creatives to work behind the camera, proving that inclusion and innovation go hand in hand.

Miss Jasmine May Cachia Mintoff

Consultant in Paediatric Dentistry, Royal National ENT & Eastman Dental Hospitals Jasmine is a Paediatric Dentistry Consultant at the Royal National Ear, Nose and Throat and Eastman Dental Hospital. She has worked in paediatric dentistry for over eight years and has a particular interest in managing dental trauma and supporting children with dental anxiety. Her research interest in OI began with investigating oral-health–related quality of life in children with osteogenesis imperfecta, which led to a sustained academic and clinical interest in OI. Jasmine is committed to improving access to dental care, strengthening interdisciplinary support, and enhancing the overall experience of children and families living with OI.

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@BrittleBoneUK

Patricia Osborne

CEO | Brittle Bone Society (BBS) Patricia Osborne is the Chief Executive of the Brittle Bone Society and has been working with the charity since 2009. Patricia has developed expertise working previously in the media, politics, and sport. Her career included 14 years working for a leading publisher in Scotland, 4 years serving as an Elected Member and as Chairperson for a sports National Governing Body. During her time with the BBS, Patricia has worked on four successful strategic plans. Patricia’s focus has been on establishing the best support possible for the OI community, the formation and set up of the charity’s Medical Advisory Board and Scientific Committee, and achieving membership to the Association of Medical Research Charities (AMRC).

Dr Louisa Petts

Research, Impact and Innovation Officer | London Academy of Music & Dramatic Arts Dr Louisa Petts (she/her) is a deaf researcher, lecturer, and community dance artist. She completed her PhD at the Centre for Dance Research at Coventry University in 2024 and previously an MSc in Dance Science at Trinity Laban Conservatoire of Music & Dance. Her research centres on person-centred, accessible and empowering creative practice drawing from her community dance practice with people living with dementia and Parkinson’s.

Currently, she researches dance experiences with older adults, D/deaf, disabled, neurodivergent, blind and visually impaired, learning-disabled, and chronically ill individuals. She is interested in co-creation and art-based methodologies. She also works as Managing Co-Editor for the Journal of Dance and Somatic Practices, and as Research, Impact and Innovation Officer at the London Academy of Music & Dramatic Art (LAMDA).

Professor Stuart Ralston

Professor of Rheumatology | University of Edinburgh Prof Ralston graduated from Glasgow University in 1978 and underwent higher medical training in General Medicine and Rheumatology. He is the Professor of Rheumatology at the University of Edinburgh and is an honorary consultant rheumatologist in NHS Lothian where he is clinical lead for the osteoporosis service. He has researched widely on the pathogenesis and treatment of bone diseases and is chief investigator on the TOPAZ trial which investigated whether teriparatide followed by zoledronic acid is superior to standard care at preventing fractures in adults with osteogenesis imperfecta. He was editor-in-chief of Calcified Tissue International between 2000 and 2025 is an editor of Davidson's Principles and Practice of Medicine. He was chair of the Commission for Human Medicines for the Medicines and Healthcare Regulatory Authority (MHRA) between 2013 and 2021 and continues to act as an advisor to MHRA on matters relating to medicines for women’s health and rheumatology.

Stephen Ryan

Managing Director | Narration With over a decade of experience in marketing and brand management, Stephen has been instrumental in the success of many iconic organisations. Stephen has won a slew of awards, including 4 Cork Digital Marketing Awards and 2 Irish Radio Awards in Cork. He is also a lecturer in digital marketing and marketing at Munster Technological University, where he helped to develop the first Master’s in Digital Marketing Strategy. Stephen has also been a guest lecturer at UCC on their MBA programme and has given talks at numerous marketing events.

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@BrittleBoneUK

Trustee Board

Elaine Healey Chairman

John Phillips Vice Chairman

Robert Gordon Treasurer

Angela Stewart

Prof. Nick Bishop

Yvonne Grant

Prof. Margaret Smith OBE

Thines Ganeshamoorthy

Liz Robertson

Dom Hyams

Samantha Renke

Joanna Cannon

Prof. Faisal Ahmed

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety

Secretary

@BrittleBoneUK

Become a

Member of the Brittle Bone Society (BBS) Our £20 annual membership helps us to do what we do and entitles you to updates, support, research and so much more!

At the BBS, we deeply value our members' contributions to our work.

As a member, you will keep in touch with the OI community, get involved in shaping your charity's future, have your say on our events and vote at our AGM!

Join us via the QR code today!

Sign up now!

@brittlebonesociety

@brittlebonesociety

@brittlebonesociety 10

@brittlebonesociety

@BrittleBoneUK

2026 Annual Family Conference & AGM Saturday 8th August | Jones Day Offices, London

With thanks to:

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.