Celebrating #roarsome children with undiagnosed genetic conditions
It’s Undiagnosed Children’s Day. It is hard to believe that it was seven years ago that Lauren (now of SWAN UK) and I began Undiagnosed Children’s Day (It used to …
Category: Undiagnosed
Undiagnosed, but Dottie’s condition affects the whole family
6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed. Having an undiagnosed …
Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition
Happy Undiagnosed Children’s Day! Did you know that around 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare …
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 …
My #Undiagnosed Day video to say thanks to those who get care right.
I have three children. All three have an undiagnosed genetic condition. One is a wheelchair user, has feeding tubes, and complex medical needs, one is a bit wobbly on his …
My SWAN journey from denial to motivation with my undiagnosed son
Today is Undiagnosed Children’s Day, a nationwide event aimed at increasing awareness of SWAN or Syndromes Without A Name (also known as an undiagnosed genetic condition). Around 6,000 disabled children are born every …
Work and the parent carer: a choice or a right?
Today I am delighted to introduce Sarah Down who has agreed to write a guest post for us. Sarah is mother to a lively four and a half year old …
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 …
10 tips for geneticists from parents of children with undiagnosed and rare diseases
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 …
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 …
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 …