Supporting a child with Addison’s Disease at school
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 …
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. …
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 …
Many of us know what it’s like to be questioned intrusively by complete strangers because of our child’s disability – whether it’s their behaviour or an obvious physical difference that’s “wrong”. …
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. …
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 …
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 …
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 …
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 …
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. …
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 …
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 …
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 …
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 …
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
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 …
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 …
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 …
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 …
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 …