Coufetery Comms

Today on day 18 of our rare disease awareness initiative, we have another birthday. HAPPY 3rd Birthday Mias!! Mias's mum Carien,...

On day 17 of our rare disease initiative, I will not be writing a personal story, but some insight into the young voices of the...

Day 16 of our rare disease awareness initiative. We share the story of Allison's father, who had Aplastic Anaemia. Accurate information...

Today, as we are half way through our rare disease awareness initiative, a little reminder of why we are doing this. The build up to Rare...

On the 14th day of our rare disease initiative, I have the privilege to present David, who, at 36 years of age, is the oldest person...

This photo by unknown author is licensed under CC-BY-NC-ND Today, on day 13 of our rare disease initiative, I wanted to share John's...

On day 12 of our rare disease initiative, I have made a change to the format, to cover something that I feel completely necessary to...

Today is day 11 of our rare disease initiative, and I had the absolute privilege of talking to Nev, the father of Caoimhe, who has CAMK2....

Today is day 10 of our rare disease initiative. Today, Elisia's mum, Claire shares their journey of another ultra-rare condition, that...

We have reached day 9 of our rare disease initiative. Today, Landry's mum, Lindsay, shares their journey of being diagnosed and living...

Today is day 8 of our rare disease awareness initiative. I was contacted by Riham, who wanted to share her story of her two boys, Omar...

We are already one week into our rare disease awareness initiative! Today, we are sharing Sadie Rae's story. This heart-breaking story is...

On Day 6 of rare disease awareness, we are sharing Claire's story. Claire's diagnosis story is a protracted and frightening one, partly...

On Day 5 of rare disease awareness we are sharing Benjamin's story. Benjamin lives in the UK with his twin sister, elder sister and his...

Day 4 of the rare disease awareness initiative, I would like to introduce you to Evana. who lives in South Korea and has Ehlers-Danlos...

On day 3 of the rare disease awareness initiative, I would like to introduce you to Mabel. Now, Mabel and I go way back. She was at...

Amelia and Ollie are brother and sister, living with their family in the UK. They both have a neurodegenerative disorder called Batten...

Today is the first day in my initiative to raise awareness for Rare Disease Day, coming up on the 29th February. I will post something...

The Batten Disease community are heartbroken to learn that the biotech company REGENXBIO have decided to stop further enrollment and...

Williams Syndrome. I had never heard of this until my son was at nursery with a little girl called Mabel who has the condition. I...