It looks like many more children with SEND have been able to go back to school this month, latest government figures show 15% of children with Education, Health and Care …
SNJ note: It’s #RareDiseaseDay around the world. Today, CEO of Genetic Alliance UK, Jayne Spink, talks about a new “red alert” system that can help thousands of people. But it …
It’s Undiagnosed Children’s Day. It is hard to believe that it was seven years ago that Lauren (now of SWAN UK) and I began Undiagnosed Children’s Day (It used to …
It’s Rare Disease Day, something we traditionally mark, with both Renata’s and my own family being affected by rare conditions and all that it brings. This year I want to …
Imagine a world you can neither see nor hear, yet you must find a way to grow and thrive within it, feeling your way, using the senses you do have …
The thing that worries me most about my disabled daughter as she gets older is who will understand her. Who will really get to know who she is, and what …
6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed. Having an undiagnosed …
“Did you say ‘Retz Syndrome’? How do you spell it?” These were the questions I asked the neurologist who speculated in passing that this might be the explanation for why …
It’s Rare Disease Day this week and evey year we like to highlight the day, on 28th February, by telling you some stories of children and their families who are …
Renata and I first met Steph Nimmo back in 2013 at the Department for Education when a group of SEND bloggers were invited to speak to then SEND Minister, Ed Timpson. …
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 …
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 …
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 …
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 …
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 …
