In the UK, clinicians and patient representatives came together specialising in rare bone conditions to identify care challenges and make recommendations on potential solutions to help improve care and promote a holistic approach to support people with these conditions. A steering committee was convened to develop the Proposed framework on a networked service model for care of adults living with rare bone conditions in England.

The document developed was led and funded by Kyowa Kirin, with writing support from Evoke Incisive Health. The steering committee had full editorial control of its content and received no payment for their contribution and insights.

Below is an infographic of the proposed framework on a networked service model for care of adults living with rare bone conditions in England.

You can read more about the framework here.

 

Framework Infographic

 

Fourth Year Dental Students, Dundee University

 

The 4th year Dental Students at Dundee University had been doing some research work with local groups as part of their course work. They had reached out to various charities in the area including the Salvation Army, Advocating Together and the Brittle Bone Society.

CEO Patricia Osborne and Trustee Yvonne Grant and long standing member Mark Ross travelled to the lecture theatre in the nearby university to hear the students presentations on the 18th April 2023. They also listened to a number of presentations by other groups and were very impressed with the level of commitment by the students to reach out to groups that clearly needed some assistance with their oral health.

 

BBS Project group

 

The group focussing on the BBS project had previously come along to our offices in Guthrie Street and met with a number of members, this was of course the group which we were most excited to hear what their final conclusions and outcomes were.  (You can read about their previous visit here.)

They broke up into a few groups and had some focussed questions about dental concerns and trying to find out ways to improve dental care for people with OI.

To get their presentation off to a flying start the students opened up with a quiz – testing the knowledge of the other students in the audience. The questions were about amalgam restorations being used on OI and DI patients and when should an orthodontist examine a child with OI and at what age. It was amazing to hear some of the gasps when some of the delegates had answered incorrectly. It was really just so marvellous to see an entire room of healthcare students so engaged in wanting to learn and understand more about OI and what they could do to make it a reality.

We enjoyed all the presentations immensely.  Its so uplifting to hear all those knowledgeable students who will all make fine dentists.

 

Awareness

 

The students had mocked up a trial data info leaflet.  We have already pledged that we would be really grateful if they wanted to discuss further with us.

We were also blown away that the students are considering further awareness raising of OI around Wishbone Day. They have pledged to wear yellow and challenged themselves to speak to as many other students across the faculty that they can possibly manage on the day.

 

 

Brittle Bone Society (BBS) Westminster Parliament reception event (OI Awareness)

 

13th June 2023 at Westminster, House of Commons, London 2 to 4 pm

 

The BBS secured sponsorship from the local constituency MP Chris Law to support this event at the Parliament. The initial project commenced 1 year ago; seeking greater awareness of OI and calling for the month of May to be recognized, generally supporting the needs of the OI community. We encouraged our members to write to their elected representatives to bring their attention to the OI community. At this planned event we presented the results of our patient charter highlighting the shortfalls in patient care. We are also grateful that Mr Law raised an early day motion in parliament to call for greater awareness and a month of focus on OI.

 

Please contact your MP about the event

 

We asked members to get in touch with their elected representatives and make them aware of the event and encourage them to attend. We were pleased when Rt Hon Stewart Hosie MP agreed to sponsor the event, once Mr Law had to step back due to other committments.

 

OI army of ambassadors

 

All the individuals and their close relatives involved in ‘the BBS year long campaign’ and who feature on our literature about it were invited to attend. Shani Dhanda, Monique Jarrett, Yvonne Grant, Eva Kelly and her mum Silean, Lucy MacConnell and her mum Dr. Niamh MacConnell, Kieran Dube and mum Rachel Dube, Kat Watkins, Max Edney and dad Steve Edney, Richard Toner, Amna Hammad. We also welcomed former Trustee Jacky Boyd and daughter Alice who manged to attend from republic of Ireland – standing in for young Lucy MacConnell who wasnt able to make the date.

Other OI ambassadors who helped us in other campaigns and have given talks and presentations representing the Charity were invited.There was good representation from the Charity’s Trustee board, BBS medical advisory board and scientific advisory board representation. Key healthcare professionals either involved or interested in our work and other NHS personnel and sponsors. Various funders were also invited to attend, such as friends from the wider rare bone disease network. E.g. HPP, XLH, Fibrous Dysplasia. The aim was to raise awareness of OI and foster greater support for care in rare bone diseases.

 

Speakers

 

We had an impressive line up of speakers our supporting host the Rt. Hon.  Stewart Hosie MP, we had apologies from The Lord Kevin Shinkwin who had travel issues, CEO Patricia Osborne, Vice Chairman and Trustee Mr John Phillips, Professor Richard Keen – Chairman of our Scientific Advisory Board, Dr Judith Bubbear (standing in for Chair of our MAB, Assoc. Prof Kassim Javaid) and Steve Edney (dad to Max, advocate of OI and champion fundraiser for the BBS). Trustee Yvonne Grant recited a poem written by her late mother and trustee Thines Ganeshamoorthy closed the days event with a vote of thanks.

 

Agenda

 

Welcome address from MP  about the charity’s standing in the community and hopes to raise more awareness (with input about the UK Rare Disease Plan).

We addressed our important work to develop care pathways referencing to any network care work BBS have contributed to. We referenced published papers we have achieved (eg. The Impact of Covid on the OI Community) and provided an update on new treatments/exciting prospects including research in OI care. There was also a talk from Steve Edney on his, and his family’s own OI Journey.

 

Westminster Parliament Reception Event: Press Release

 

Brittle Bone Society attended the Houses of Parliament in London 13th of June bringing their year long OI CAN campaign to Westminster. The event was sponsored by the Rt Hon Stewart Hosie MP, constituency MP for Dundee East and SNP Treasury spokesperson. The OI community gathered on the buildings’ Terrace Pavillion – on what was one of the sunniest days of the year, alongside the charity’s Trustees, staff and invited VIP guests from OI communities in Norway and the USA along with senior NHS Healthcare professionals for an afternoon of engaging talks and updates.

 

The campaign which was launched one year ago was calling for more awareness about OI during the month of May. The days’ event was to acknowledge those who signed the EDM (early day motion) and to signal the latest position on the campaign and update on vital work the charity are undertaking to formalise care pathways for adults with OI. They also took the opportunity to announce exciting developments with a new NHS RDCN (Rare disease care network) involving over 22 hospitals UK wide that will foster better understanding and exchange of knowledge with healthcare professionals around this rare condition affecting approximately 5,000 people in the UK today.

 

Charity CEO Patricia Osborne provided an outline of the Charity’s commitment to capture views and how this resulted in their People’s Charter and how this went on to shape the Charity’s next steps to achieve improved care. Vice Chairman John Phillips went on to host the day’s event introducing an impressive line up of contributors. Trustee Thines Ganeshamoorthy closed the days event with a vote of thanks.

 

Key attendees who fronted the OI CAN campaign from Scotland, England, Wales, Northern Ireland & the Republic of Ireland, lent their voice to the day representing the widest possible reach of the OI community and who featured on the Charity’s promotional literature. The impressive line up included the leading disability advocate and campaigner, Shani Dhanda, alongside Kieran Dube, Kat Watkins, Yvonne Grant, Monique Jarret, Max Edney and Amna Hammad-Saleem. Representing Ireland was Alice Boyd deputising for Lucy MacConnell.

 

The audience heard from prominent speakers in the NHS including Chairman of the Charity’s Scientific Advisory Board –  Professor Richard Keen of the RNOH Hospital, London who discussed groundbreaking research currently happening in Osteogenesis Imperfecta, and his colleague Dr Judith Bubbear who shared the outline of the soon to be launched new Rare Disease Care Network (RDCN). The Charity will formally host this launch in central London in November 2023.

Other contributors included champion fundraiser for the BBS Mr Steve Edney, an exceptional ambassador for the BBS, who shared his experiences as a parent of a child with OI and his journey with BBS, from raising awareness, to fundraising and how he and his wife Leanne are focussed on helping the charity achieve better care for adults with OI. It’s worth highlighting that just days after this event, Steve Edney was awarded a BEM in the Kings Honours List, for his incredible achievements raising awareness and fundraising for the BBS Charity.

The concluding part of the days event involved poetry recitals from Trustee Yvonne Grant (written by the late Dr Margaret Grant MBE) written in 1974 and Max Edney with an offering penned some 50 years later . . . (Through the Eyes of a Child by Leanne Edney). Both poems were incredibly insightful and captivating.

 

Sign the BBS Charter

 

There is still time to sign the #OICANMayCampaign charter! You can sign the charter here. 

 

 

 

Brittle Bone Society (BBS) Scottish Parliament reception event (OI Awareness)

 

23rd May 2023 at the Scottish Parliament, Edinburgh 6 to 8 pm 

 

The BBS secured sponsorship from the local constituency MSP to support this event at the Scottish Parliament. The initial project commenced 1 year ago; seeking greater awareness of OI and calling for the month of May to be recognized. Generally supporting the needs of the OI community. We encouraged our members to write to their elected representatives to bring their attention to the OI community. At this planned event we presented the results of our patient charter highlighting the shortfalls in patient care.

 

MSP Support

 

We asked members to get in touch with their elected reps to make them aware of the event and encourage them to attend. The host, MSP Bob Doris also fostered support from (the house) elected members to attend.

 

OI army of ambassadors

 

All the individuals and their close relatives involved in ‘the BBS year long campaign’ and who feature on our literature about it were invited to attend. Shani Dhanda, Monique Jarrett, Yvonne Grant, Eva Kelly and her mum Silean, Lucy MacConnell and her mum Dr. Niamh MacConnell, Kieran Dube and mum Rachel Dube, Kat Watkins, Max Edney and dad Steve Edney, Richard Toner, Amna Hammad and more!!!

 

Other OI ambassadors who previously helped us in other campaigns by giving talks and presentations representing the Charity were invited, which included representatives of the Charity’s Trustee board, BBS medical advisory board and scientific advisory board representation. Key BBS supporters, healthcare professionals either involved or interested in our work and other NHS personnel and sponsors. Various funders and friends from the wider rare bone disease network. e.g. HPP, XLH, Fibrous Dysplasia, were also invited to attend.  The aim of the evening was to raise awareness of OI and foster greater support for care in rare bone diseases.

 

Speakers

 

We had an impressive line up of speakers, such as Host MSP Mr Bob Doris, CEO Patricia Osborne, Vice Chairman and Trustee Mr John Phillips, Professor Stuart Ralston – member of our Scientific Advisory Board and Laura Pilkington (young member, advocate and Disability Equality Lead within the Scottish Student Sport Equality Steering Group.).

 

Whats on the Agenda

 

Welcome address from MSP about the charity’s standing in the community and the hopes to raise more awareness (with input about the UK Rare Disease Plan – Scottish slant). We addressed our important work to develop care pathways referencing to any network care work BBS have contributed to. We also made reference to published papers we have achieved eg. Impact of Covid on the OI community and gave updates on new treatments/exciting prospects including research in OI care as well as a talk from Ms Pilkington on her own OI Journey.

 

Reflecting on the Event: BBS Goes to Holyrood & Getting in the Mood for Conference

 

 

BBS staff and trustees made their way to Edinburgh to visit the Scottish Parliament on Tuesday 23rd May for their highly anticipated ‘OI CAN’ Awareness Event.

 

The evening event was held in the formal Holyrood Room, with sponsorship from Mr Bob Doris MSP, who is convenor of the cross party working group on rare and undiagnosed conditions. We were delighted to have senior members of the Scottish Government attending, including Minister Jenni Minto, for Public Health, Sport & Wellbeing, Joe Fitzpatrick, Minister for local Government Empowerment and planning and other MSP’s. Our guest list of BBS members, healthcare professionals, academics, funders and sponsors was extensive. We had a packed and very happy room on the night!

 

The meeting featured an overview of our year long campaign delivered by our CEO Patricia, with talks from Professor Ralston who gave an update on the TOPAZ trial and research at the BBS, Ms Laura Pilkington who gave a passionate overview on her journey in swimming/sport, Mr Alasdair Bachell, University of Dundee recapped on his progress with the History Bones Archive project. The outright highlight for most of us in the room – was the Poetry Recital by Trustee Yvonne Grant (‘School Worries’ written by the late Margaret Grant) and one (by unknown) on issues around access, beautifully delivered with NO notes by young Mila Perry. It was a perfect end to a marvelous night.

 

Vice chairman John Phillips hosted the evening and trustee Margaret Grant offered up a vote of thanks to all concerned. Ordinary members we spoke to said how much they enjoyed the event and it that it genuinely put them in the mood for Conference.

 

Sign the BBS Charter

 

There is still time to sign the #OICANMayCampaign charter! You can sign the charter here. 

 

 

 

Coreen attended the first face to face POINT (Paediatric OI National Team) meeting since pre Covid Pandemic on the 9th February in Birmingham.

There were Allied Healthcare professionals in attendance from GOSH, Sheffield, Birmingham, Bristol, Manchester and Cardiff Childrens Hospitals.

The healthcare professionals provided updates during the morning session on each of their centres and  various projects they are working on. Highlights and learning from recent medical conferences anyone had attended were discussed as well as poster presentations which had submitted on various research topics.

Coreen had an opportunity to provide updates on BBS activity covering topics such as Events, Care Pathways, Research and surveys, factsheets and new collaborations.

In the afternoon the various specialities divided up into breakout groups to discuss topics relevant to them.

If you want to find our more information about POINT see here

Lord Shinkwin’s Keynote Speech OI2022

The BBS are delighted to share Lord Shinkwin’s incredible keynote speech at OI2022.

OI International Scientific Conference 2022

 

During this years OI International Scientific Conference, held in Sheffield, Lord Shinkwin delivered the keynote speech. The BBS are delighted to be able to share this fantastic speech which was delivered at Sheffield Cathedral.

You can watch the full speech here.  

 

We also have the transcript of the speech which you can download here: Lord Shinkwin Keynote Speech OI2022.

 

Subscribe to our mailing list

Sign up now to be the first to know about special events

Subscription Form