OI 2022 Sheffield  – 14th International Conference on Osteogenesis Imperfecta

 

The Brittle Bone Society , along with Osteogenesis Imperfecta Foundation and Osteogenesis Imperfecta Federation Europe are delighted to offer a number of awards to healthcare professionals and researchers working in lower middle-income countries to attend this scientific conference to be held in Sheffield, UK from the 30th Aug to 2nd Sep with all costs covered.

This international OI conference brings together scientists and clinicians from a wide range of disciplines, presenting updates on developments in scientific research, medical and surgical treatment options and discussions around topics such as rehabilitation, quality of life, pain, mental health and service development.

If you are a researcher and wish to apply please find out more information here.

The Brittle Bone Society were delighted to receive a request to provide an article about Osteogenesis Imperfecta for the September edition of Open Access Government online publication.

Chief Executive, Patricia Osborne talks about the condition, research and the importance of multi disciplinary services.

Click here to read the Full Article

“Turning the talk into action: We must have robust, fit for purpose and funded solutions now” Chief Executive, Patricia Osborne contributed to an article for Rare Revolution Magazine about provision of services and support for rare conditions.

You can read the full article by clicking here.>>

Many of you will know about the recent Government’s plan to ingather GPs’ data. Many media reports and interested parties started to ask questions around how that information was being taken and how it would be used.

The Govt have now decided to postpone the June cut off date until September. BBS welcome this step – so that we can find out more about the project.

It’s better to ensure that people will be better informed about their rights to opt out if they wish to. As was reported recently in the press few realise how simple it is to identify individuals from medical records and it is important we learn about appropriate safeguards and security around this scheme.

You can read more about NHS Digital by clicking here.>>

Brittle Bone Society pay tribute at the sad news of the passing of Gertie Farmery. A lovely lady who alongside her husband John, devoted most of her life supporting the work of the BBS. A lifelong advocate in raising awareness of OI and fundraising for the work that the Society has undertaken from the very beginning of the Charity’s journey back in 1968.

Gertie was a front runner in the set up of the Longridge Branch alongside other dedicated volunteers and hardworking supporters. They ran numerous events annually including concerts and gave talks about what it was like to live with OI.

The Society were privileged  to ensure that they suitably honoured and recognised Gertie and John’s remarkable achievements at the Charity’s 50th Anniversary Event in Dundee. BBS Trustees were pleased to bestow suitable recognition at the annual charity conference in front of all the ordinary members and friends. They were given a Lifetime Achievement Award presented by the Chairman Elaine Healey and Treasurer Robert Gordon.

Elaine Healey Chairman said: “The Society were truly grateful for the devotion, friendship and regular generous donations so kindly offered by the Farmery’s every year – and that their impact was immense.”

Friend and Trustee Yvonne Grant was also very saddened by the news – The Farmery’s often visited Dundee and were regular visitors to the Grant household. Yvonne and her dad David have many fond recollections of being with the Farmery’s both at local fundraising events, on caravan holidays at Monifieth, Fleetwood and London, and visiting Win, Gertie’s Sister, and late Brother in Law John in Longridge. She said: “The respect and love shared for John at this time for his loss was heartfelt. Always Remembered for her wicked sense of humour, kindness and generosity to not only the Grant Family but to others too. We will miss you Gertie RIP.”

Patricia Osborne CEO said: “I was so pleased I got the chance to meet Gertie on more than one occasion, she and John always visited the office on their regular trips to Scotland and they always made time to pop in and meet the staff and chat. They were truly devoted to the cause of the Brittle Bone Society and we send our condolences to John and the family.”

The family very kindly agreed permission for a floral tribute from the Brittle Bone Society. Gertie, dearly loved wife of John, dear mother of Lynda (deceased), beloved sister of Win, and a good friend to many. The funeral service took place at St Lawrence Church, Longridge 7th June. Donations if so desired to Brittle Bone Society, William Houghton Funeral Directors, Chapel Hill, Londgridge, PR3 3JY

 

 

The BBS seeks to appoint a Chairperson to oversee the work of the Scientific Advisory Board. 

You can read more about this role and how to apply here:[Download not found]

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