The high costs of living with a disability, especially if it’s rare
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. …
Search Results for: rare disease
The advocate leading a summit to make patient and medical collaboration less ‘rare’
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 …
Life with a rare facial difference: Kaddy’s story of living with Apert syndrome
I’ve recently been helping a new rare disease organisation get off the ground. Elijah’s Hope was already helping families who have children with disabilities in the South West of England. …
Raising awareness of children’s conditions so rare, they’re undiagnosed.
Tania writes: Recently, when Debs & I went to Westminster, we met Renata Blower, a Mum who blogs about her life as the parent of a child with an undiagnosed …
LIVE WEBINAR: Will the Government’s “SEND Improvement Plan” fix SEND? Register here!
While we’re still working on written analyses of the Department for Education’s now-landed “SEND Improvement Plan”, we wanted to bring you something that you could participate in and ask your …
Opinion: Birth-injury compensation payouts highlight the disparity in support for children born disabled
SNJ note: Parent-carer of a child with complex needs and SEND campaigner, Rachel Adam Smith, joins us as a columnist. Her article is followed by the views of a paediatric …
Foetal Alcohol Spectrum Disorder: What doctors and schools need to know
With Sandra Butcher, Chief Executive of The National Organisation for FASD and Brian Roberts, consultant and former Virtual School Head We assume that most women know that drinking alcohol in …
What schools need to know to support learners with hypermobility and Ehlers-Danlos syndrome
with Jane Green Ehlers Danlos syndrome comes in many guises and as such, it often takes a long time for people with this multi-symptomatic condition to be diagnosed. …
Top tips to get your disabled child confidently back into post-pandemic life
with Rajvinder Singh Gill, Head of Wellbeing at St Piers School, Young Epilepsy With most children back at school, attention has turned to getting back into the swing of what …
How we fired up our disabled children’s home learning with the specialist kit they need
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 …
Why does Josh’s review seem to think disabled children are “Not Known to Social Care”?
From what I can see, the independent review of children’s social care doesn’t seem to be much interested in finding out about the experiences of disabled children and their families outside the …
Family Fund grants: the who, what and how to apply
with Jim Paterson, The Family Fund Earlier in the year, the government announced it was giving an additional £10 million to the Family Fund during the pandemic, to families who …
It is a mistake to assume all vulnerable children are ‘at risk of harm’
Coronavirus has divided Britain into those who are vulnerable and those who are not. But vulnerable means different things to different groups of people, and it’s important to still differentiate between vulnerable because of need and vulnerable because of risk, especially when talking about children with SEND
Urddad-Foundation
Patient and Family Support for Patients who have been diagnosed with a rare Rare or Ultra Rare Rare Disease we give support to families and we are setting up a …
My “control freak’s guide” for my disabled daughter’s dignity and care in hospital
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 …
Help! I’m a parent carer and I’m on my VERY last nerve!
With contributions from Angel Kelly, SNJ Mental Health Editor It’s not just tough physically being a parent of a disabled child. The toll on mental health can be extreme. It’s …
Fighting for my disabled child’s right to summer fun
Tania’s note: Today we’re welcoming a new columnist to SNJ, Catriona Moore. Catriona is the parent of a child with complex needs from the rare disease, Rett Syndrome. She works …
Holly’s autism film starring role helped raise her classmates’ awareness
Last week, I said Autism Awareness had graduated from a day to a week. Dear reader, I was wrong. It’s a month. Look, if Ehlers Danlos syndrome, a rare disease …
What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
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 …
Can you help harness parental knowledge about genetic intellectual disability?
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 …