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 …
Search Results for: rare disease
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 …
#CRDN2016 Looking to the future where patients and carers are always involved in their care
I spent yesterday in Cambridge at the Cambridge Rare Disease Network Summit 2016. CDRN is run by the amazing Kay Parkinson, who lost her two children to Allström syndrome, whose moving and …
Who’s using your family’s health data and how secure is it?
Beth McCleverty is the columnist today from Genetic Alliance UK Data, from many angles, has been somewhere near the top of the agenda for a while now. Whether the issue …
How will #Brexit affect children and young people with Disabilities?
I was going to start this piece with “As the dust settles after the #Brexit vote…”, but every day the dust seems to get more dense and choking as the enormity …
Undiagnosed and raising awareness to patients, professionals and parliament
I’ve been to a couple of events in the last week or so around Undiagnosed Children’s Day. As going anywhere is quite an effort for me, I wanted to share …
About Robert
Based in Barcelona, RareConnect is the online community forum for rare disease patients run by EURORDIS, the European Rare Diseases Organisation. As the Senior Online Communities Manager, Robert Pleticha, helped …
About Genetic Alliance UK
We are delighted to welcome Genetic Alliance UK, as the new source for our Rare Disease, Genetic and Undiagnosed columns from 2015. Genetic Alliance UK is the national charity working to improve the …
About Renata
I’m Renata Blower, co-director of Special Needs Jungle. I describe myself as a realistic optimist, which is helpful when you have three children all with their own mix of needs. …
Top tips for Crowdfunding for your support group or charity
I’ve just attended a workshop on Crowdfunding held by the Findacure Foundation. The workshop was specifically aimed at rare disease groups, highlighting the fact that crowdfunding can be used in …
SEN Assessments and Outcomes: What and when
I had a very busy day on Tuesday at the 25th Anniversary conference of national and international charity, Genetic Alliance UK. There is some really exciting work being done in genetic …
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 …
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 …
Nice to tweet you.. The SNJ Twitter philosophy
We get lots of new followers on Twitter every week, which is obviously pretty fab. And I’m guessing that they would all like us to follow them back. But we don’t …
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 …
SEN Minister Ed Timpson talks to Special Needs Jungle (video)
We are approaching the SEN reform legislative finish line with Parliamentary approval of the new SEND Code of Practice so close I can feel its breath on the back of …
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 …
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 …
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 …
Great stories and one huge event
Here’s our personal picks from the past week’s stories. Take a look and add your own