Abigail’s rare childhood disease that she won’t outgrow
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 …
Tag: RareConnect
Join the discussions that are connecting the rarest of rare diseases
I’ve written on SNJ before about how the online community I help to manage, RareConnect, works to bring together families facing the challenge of living with rare disease. We now have …
The rare disease game-changers showing how SEND co-production can work
Last week I attended the European Conference on Rare Disease being held in Edinburgh*. It was three days of listening to presentations about developments in rare disease research and medicines and …
The mum whose photography project is focusing on children with rare disease
When your child has a very rare condition it’s hard not only to find specialists and the right treatment but also to find others who understand your experience. Ceridwen Hughes’s …
Our new Rare Disease columnist asks you to help get MPs interested in genetic conditions
Tania’s note: We’re delighted to introduce Genetic Alliance UK as our new columnist for rare disease, genetic and undiagnosed conditions. Genetic Alliance UK is the national charity working to improve …
Volunteers’ Week: Thanks to our volunteer writers and looking for more help!
As it’s Volunteers’ Week, I’d just like to take a moment to thank everyone who has volunteered their time to write for Special Needs Jungle this past year. Anyone who …
Happy Mothers’ Day.. to my husband
It’s Mothers’ Day, at least it is here in the UK. For me, this will be the first year that Son1 hasn’t spent Mothers’ Day on the football pitch. That …
#RareDisease Day: Impossible situations create remarkable people
Today is Rare Disease Day and during the past week we have been featuring a number of families who have been affected by rare conditions. Even if you’re not especially …
#RareDisease Day: Our quest for answers for our daughter’s mystery illness
When you have a baby, you expect that raising them will bring some ups and downs. But for Laura Joliffe and her husband Graham, life with their daughter Ava has …
#RareDisease Day infographic and talking parent/patient advocacy
As I’m a fun kind of gal, yesterday I watched the livestream of the #rareEU2015 meeting in Brussels held by EURORDIS, Europe’s rare diseases patient advocacy alliance. Well, listened to …
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. …
The pain of finding acceptance with Apert syndrome, a facial difference
We all have a basic need to be accepted by others. As many families affected by a disability know however, not being accepted by peers or being subjected to stares …
How Jonah’s parents are connecting families with his rare disease -and how you can too
As an online manager of international patient communities for many different rare diseases, I receive emails every day from parents and affected people looking for help and information about their …
My daughter’s journey with Alström Syndrome
In the wake of Rare Disease Day, the largest ever awareness campaign (now there’s a challenge!) it’s hoped that the spotlight has been well and truly illuminated on the thousands …
Rare Disease Day 2014: the largest awareness campaign ever, what’s next?
I’ve been involved in the recognition and celebration of Rare Disease Day, which is today, for the past five years. The main objective of the day is to raise awareness …
SNJ’s Pick of the week – Not to be missed!
We had a post every day last week here on Special Needs Jungle, so check out below for ones you may have missed plus other good stories we spotted shared via Twitter!
How growing up with disability can lead to a life of compassion
We often wonder at SNJ, as we all must, how our children with chronic illness, rare conditions or additional needs will cope when they are adults. How will their difficulties …
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 …
Rare Disease Day: My son has Retinopathy of Prematurity
Today, 28th February is Rare Disease Day. It’s an awareness raising day for the millions of people around the world who are affected by rare conditions. Most suffer from lack …