Guest Post By Dr Andy Bilson, Emeritus Professor at the University of Central Lancashire We’ve written a number of times about Fabricated or Induced Illness, where parents of children with …
SNJ note: Catriona wrote in March about the devastating passing of her beloved daughter, Amy, who had Rett syndrome, at age 17. Today she has written about the aftermath of …
with Tina Coope, Education Lead, PANS PANDAS UK SNJ is 17 years old this month, and in that time we’ve seen many developments in children’s health, including new conditions, diagnostic changes …
Today, our post is dedicated to Amy Reyes, the daughter of our columnist Catriona Moore, and her husband Eduardo Reyes. Amy is also the sister of Abby Reyes. Devastatingly, Amy …
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 …
If you live with a rare or chronic illness, managing fatigue is something that is a daily challenge. One technique for coping is to use “pacing”, managing energy levels by …
with Elly Chapple 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 …
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 …
