Dundee City West MSP, and Minister of Parliamentary Business, Joe FitzPatrick visited the Dundee offices of Brittle Bone Society to meet Chief Executive Patricia Osborne and hear about recent progress which the charity has been making in raising awareness of Osteogenesis Imperfecta.
The rare disease affects about 1 in 15,000 people in the UK.
The MSP learned that a medical advisory board of healthcare professionals has now been formed to assist the Charity in its calls to lobby for a set of clinical care guidelines for people with OI, of all ages.
Patricia Osborne said: “Having a Medical Advisory Board will be very helpful to us in developing our work in the future.
We were involved again this year in the BBC Children in Need event who provide financial support towards the salary of our much needed Support Worker. The interview featured young Cameron Allen who has OI and won a charity award for fundraising this year and also Professor Faisal Ahmed of Yorkhill Childrens Hospital who is a member of our medical advisory board
“We were invited to the recent Paralympic Games – and a number of our members in Scotland are now keen to get involved in the Commonwealth Games and in becoming volunteers.
“We have been successful in attracting several significant financial awards to support our work – but we are not yet able to comment publicly on these yet.”
Speaking after the meeting, Joe FitzPatrick said: “I had been unaware that Brittle Bone Society in Dundee covers the whole of the UK and secondly I have learned that Osteogenesis Imperfecta has nothing to do with osteoporosis.
“In fact, it is a genetic bone disorder characterized by fragile bones that break easily. A person is born with it and is affected throughout their lifetime.
“Specialized chairs for people with OI are needed throughout a person’s life as they grow and develop, and these can cost up to £15,000 each.
“I learned that fundraising for chairs for older people can be problematical as the majority of funds favour children’s equipment – so can take longer to locate the funding.
“Last year, BBS contributed £66,000 towards the purchase of 40 wheelchairs - vital and much needed mobility aids for people with OI.
“Patricia explained to me that the BBS are now members of the Genetic Alliance UK organization which has helped similar smaller charities – working on specific and relevant campaigns and policy work.
“We hope there may be enough Parliamentary interest across all the political parties to set up a pressure group in Scotland to raise the profile and give a platform for rare conditions like OI.
"In the meantime, I was delighted to hear of the progress which BBS are making in their support for people with OI and look forward to working with them in the future.”