Chamber Patrons Support for SWAN children By Philip Parkin
Four-year-old Brooke Robinson was the first of hundreds of patients set to benefit from a pioneering new clinic for young people with undiagnosed conditions at Birmingham Children’s Hospital. The country’s first ever ‘Syndrome Without a Name
(SWAN)’ clinic has taken place at Birmingham Children’s Hospital. The clinic took place ahead of Undiagnosed Children’s Day, a not entirely unconnected event. That’s because ‘SWAN’ is a term used to describe
children who have a genetic syndrome that doctors have so far been unable to identify, in most cases because it is highly likely they have a very rare condition. The hospital said that each year around 6,000 children
in the UK are born with a condition that was likely to remain undiagnosed. The symptoms experienced vary, but the challenges faced by those living with a SWAN can be complex. Working with SWAN UK, Birmingham Children’s Hospital’s new monthly clinics will offer joined-up care and support to young people and their loved ones, along with genetic research and testing. The hospital is a specialist centre for the
treatment of rare diseases, treating more than 9,000 young people from across the country each year. It’s also actively supporting the national 100,000 Genome project, which is looking to create a better understanding of genetics and rare diseases.
Pictured are Birmingham Children’s Hospital’s first SWAN clinic patient, Brooke Robinson, with (from left) Sian Bicker, the hospital’s Roald Dahl Genetics Nurse, her mum, Katie Aston, Lauren Roberts from SWAN UK and Dr Larissa Kerecuk
Among one of the first SWAN patients at the
hospital was four-year-old Brooke Robinson, and her mother, Katie Aston, from Hamstead in Sandwell, said: “I think it’s great the hospital is putting on these clinics to help families like ours. They’ve helped us so much already.” Work is now underway on the hospital’s Rare Diseases Centre. The ground-breaking facility, due to open in late 2017, is being funded through the £3.65million Star Appeal, which has raised more than £800,000 to date. The new centre, the first of its type in the UK, will
play a vital role in co-ordinating and improving the care and support.
Equality needed around the table
International Development Secretary Justine Greening was VIP host at a Birmingham round table discussion – and pledged to ‘unlock the potential of half the world’s population.’ The Minister gauged the views
of top business leaders and gender specialists in Birmingham on workplace equality and how women’s economic opportunities can be improved around the world. Ms Greening will pass on their
views to the United Nations after chairing a round table at the Birmingham office of PwC, which included representatives from The Royal Bank of Scotland, Jaguar Land Rover and DLA Piper. Ms Greening addressed
gender equality in the workplace head-on, gaining an insight into what works and the barriers which widen the gap between the genders in the workplace. Ms Greening said: “From the
simple right to open a bank account, to securing a seat in the boardroom, too many women around the world still face significant barriers that stop them from reaching their full potential.”
June 2016 CHAMBERLINK 19
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