The power of pacing: Managing energy with a rare disease or chronic illness
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 …
Tag: rare disease day
Partnering with clinicians to reverse Rett, my daughter’s rare disease
“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 …
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 …
The heartache that lives alongside our son’s very rare disease
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 …
Finding my son near death started our rare journey to his genetic diagnosis
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 …
A 16 year quest to diagnose our rare bendy daughter
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 …
Birmingham Children’s Hospital puts the fun in fundraising in its fabulous Rare Disease Day event!
I had a brilliant time in Birmingham yesterday at the Children’s Hospital where they held a vibrant and fun-filled Rare Disease Day event. Roald Dahl’s Marvellous Children’s Charity was out …
Rare Disease Day: Hear our voice to help meet our needs
Monday 29th February 2016 is quite aptly named Rare Disease Day – as a leap year it’s the rarest day of the year. Around the world, people will be coming …
Birmingham Children’s Hospital leads the way with the UK’s first holistic paediatric Rare Disease Centre
How many of us spend significant amounts of our time taking our children to medical appointments, often many miles from home? Often several appointments at the same clinic are staggered …
The Rare Reality: An insight into the patient and family experience of living with a rare disease
Specialised help and services for children and adults with rare or undiagnosed conditions has always been hard to find – or non-existent – and often, parent carers and patients themselves …
#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 daughter’s devastating diagnosis changed every aspect of our lives
Today’s article featuring a family affected by a rare disease brought a strange coincidence. On Wednesday, when I was at the Rare Disease UK reception to mark the yearly Rare Disease …
Great stories and one huge event
Here’s our personal picks from the past week’s stories. Take a look and add your own
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!
Rare Disease Day: My nightmare choosing chemo to help my son’s kidney disease
As you know, we’re supporting Rare Disease Day here at SNJ both because it’s very important and also for our own very personal reasons. (See Debs’ story here) (See Tania’s …
Help for parents worried about their child’s development
It’s always a scary time when you realise your child isn’t developing at the same rate as the children of other parents you know. Sometimes it’s obvious, other times it’s …
The parents working to find a cure for deadly Sanfilippo syndrome
Jonah was born in 2008 to excited parents in New York City. But at his first year check up, his pediatrician noticed his head circumference was large for his age. …
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 …