Research into different aspects of autism can reveal many unexpected and interesting findings, which can sometimes help to improve the lives of young people in a practical way. Today we have …
Back in 2012, we ran a parent story about her son’s difficulties, “When the words move by themselves – it could be Visual Stress.” It’s also known as Irlen syndrome and …
Happy Undiagnosed Children’s Day! Did you know that around 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare …
This is something we haven’t done before – a job advert. It’s not a regular thing, but my sons’ old school More House School in Frensham, Surrey is urgently looking …
We’ve covered the Bercow: Ten Years On review last year, when Barney looked at its recommendations a decade ago and what became of them. Today, we are really pleased to have …
Having a child with rare disease can mean that you are given very little information about their condition. Parent carers find themselves becoming the expert, rather than the professionals who are …
It’s rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago and there was uproar as people were worried they would …
Rosie Collington of Rare Disease UK writes… The UK has a reputation internationally as a leader in rare disease research. Over the past few months at Rare Disease UK, we’ve …
Rare Disease Day is almost upon us and we have the third of our parent posts today about their lives with their child who has a very rare condition. We …
It’s bad enough when your child has a severe illness, but when you discover it’s a condition few have heard of, the journey to getting them the right treatment gets …
A YouGov poll of more than 800 teachers across the UK, has shockingly revealed what is potentially one of the biggest reasons the SEND reforms are not making as big …
It’s often difficult to cope and find support when your child has an uncommon or rare condition. Often, there is little understanding by the GP and no more than that …
I always like to try and talk to my son about what he has done at school that day. His normal response is “things and stuff”, unless something very specific …
In October 2016, I attended the Cambridge Rare Disease Network Summit 2016 with Tania. It was very thought-provoking and listening to families’ stories, about gaining a diagnosis for their child …
When I was at the Cambridge Rare Disease Network Summit the other week, I saw a very interesting presentation that has something of interest for every family of a child …
I don’t need to tell regular readers of this blog that dealing with the symptoms of the condition that affects you or your child is often only half the battle. …
I spent yesterday in Cambridge at the Cambridge Rare Disease Network Summit 2016. CDRN is run by the amazing Kay Parkinson, who lost her two children to Allström syndrome, whose moving and …
When there are few specialists and no medical pathways to help your child’s condition, you can feel like a pinprick in the priority of health care services. But your loved-one’s health is just as important …
Elizabeth and I were recently contacted by Jessica Kingsley publishers, asking us to review a new book. When I saw that the subject of the book was Lego and language …
In the most devastating, impossible-to-imagine grief of the death of loved ones – especially your children – it would not be unexpected for a person to turn inwards, away from the …
