As soon as they became our neighbours, our mother sent us round to play with the kids next door. Vivacious twin girls, of no interest to me, and the boy. …
I had a very busy day on Tuesday at the 25th Anniversary conference of national and international charity, Genetic Alliance UK. There is some really exciting work being done in genetic …
Today’s article featuring a family affected by a rare disease brought a strange coincidence. On Wednesday, when I was at the Rare Disease UK reception to mark the yearly Rare Disease …
As a registered carer, I recently qualified for a free flu jab at my GP surgery. This is really important for parent carers because even if you are struck down …
Much of the unhappiness with the draft Children & Families Bill, now Act, stemmed from its exclusion of children with disabilities or medical conditions who did not have a specific …
In the wake of Rare Disease Day, the largest ever awareness campaign (now there’s a challenge!) it’s hoped that the spotlight has been well and truly illuminated on the thousands …
Following on from Monday’s post, when I briefly talked about child2 having Ehlers Danlos Syndrome and suffering from pain, there is help at hand for parents when their child is in …
NICE, The National Institute for Health and Care Excellence, has today published new guidelines for the treatment of autism in children and young people. “Autism – the management and support of …
There’s been a lot of talk about the re-classification of Asperger’s Syndrome in the new US DSM-V Manual of Mental Disorders – in other words it’s bee ‘abolished’ in its …
