Scottish Government, Deputy Chief Medical Officer, Professor Marion Bain visited NHS Greater Glasgow and Clyde’s, Royal Hospital for Children today as part of a Rare Disease Awareness Day initiative.
Professor Bain was hosted by the Office for Rare Conditions at a stand in the RHC to mark the day that is traditionally hosted on the last day of February each year. This year was extra special by the fact that it fell on a leap year – giving the rare occasion of a 29th day.
The team at the stand were there to drive awareness of rare conditions, the challenges, and how the office supports patients, families, and healthcare professionals.
A rare condition is one that affects five people or less in 10,000. In Scotland, one in 17 people may be affected by a rare condition at some point in their lifetime. That’s 424,000 people in a population of five million. NHS Greater Glasgow and Clyde works with the Office for Rare Conditions to support patients and families affected by rare, low prevalence and undiagnosed conditions, and the healthcare professionals who work with them.
Dr Martina Rodie, Consultant Neonatologist at the Royal Hospital for Children and Clinical Lead for the Office for Rare Conditions, explained the importance of this collaborative work.
“While rare conditions are individually rare, they are collectively common. In many cases, there won’t be a lot of information available for specific rare conditions and parents need support from various experts to guide them in each stage of their child’s life. Working with our partners, NHS GGC and Glasgow University, enables us to ensure that support is available, and we would like to thank the Glasgow Children’s Hospital Charity who fund our service,” said Dr Rodie.
Mandy Meechan, Chief Nurse at the Royal Hospital for Children, Glasgow, and Member of the Office for Rare Conditions Steering Group explained the importance of driving awareness among their patients and staff.
“Often, children with rare conditions will require multiple forms of care and so we are glad that we’re able to offer a multidisciplinary approach here at the hospital, and we’re incredibly thankful to the Office for Rare Conditions for their work in helping support and supplement this care. We’re also thankful to Professor Bain for her visit and her drive to learn more about the challenges faced with rare conditions,” she said.
Professor Marion Bain concluded that the day was one of value to spread awareness.
“Thank you to the teams for hosting me today and explaining in detail the necessity of the important work that they do. I commend their work in improving the management of patients and families with rare conditions in addition to help drive research, with their partners, to help manage these conditions. We look forward to seeing what’s next as they continue to help Glasgow and Greater Clyde patients,” she said.
