Introducing the SNJ collaboration with patientINFORM
Some exciting news today! You know when you’re looking online for information such as medical articles or research and you come up against one paywall after another? And it’s always …
Category: Rare Disease
Patient Advocate Power! Renata helps create first specialist nurse for Undiagnosed kids
Today is Undiagnosed Children’s Day and a perfect day to tell you about an achievement for our SNJ team member and JustBringTheChocolate Blogger, Renata Blower. To mark the day last …
Our son’s undiagnosed condition brings new challenges almost every day
At the end of this week it’s Undiagnosed Children’s Day. These are conditions so ultra-rare they don’t have a name – and that brings many more challenges for families already …
#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 …
#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 …
#RareDisease Day 15: Rare with a twist makes a complex medical mystery
We’re hoping to have a number of posts this week highlighting Rare Disease Day, on 28th February. It’ the 8th year it’s been held and it is important to us …
Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive
One of the great things about having Special Needs Jungle for me, is getting to meet other women who also happen to have children with special needs. One such laydee …
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 …
Top tips & simple, effective resources for supporting children with Visual Impairment
As you may know, my son J has a visual impairment. During the first few years of his life, I spent so many hours trying to find activities to do with …
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 …
Protecting education for children with medical conditions and life-saving heart equipment for schools
Much of the unhappiness with the draft Children & Families Bill, now Act, stemmed from its exclusion of children with disabilities or medical conditions who did not have a specific …
Should Awareness Days Try Harder?
Awareness day fatigue is a 21st century issue that has turned the the definition of supporting a cause into a quick click of a like button. Have charities and organisations …
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 …
Why doctors MUST listen to patients and parent carers
You might have noticed that, here at SNJ’s virtual HQ, we have a missing columnist. Renata Blower is a mother of three, one of whom, Dominic, has an undiagnosed rare …
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 …
How our daughter benefits when rare disease groups collaborate
To highlight Rare Disease Day on 28th February, we’re featuring some personal stories from parents whose children live with rare conditions. Today, our friend Steph Nimmo, from the “Was This …
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 …