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 …
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 …
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 …
One of the biggest problems experienced by parents of children with long-term medical conditions is communicating and maintaining relationships with medical professionals. When the child has a rare disease or …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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. …
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 …
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 …
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 …
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 …
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 …
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 …
