Rare Disease Day (last day in February)

Yesterday a relative of Arlo’s was asking how common cystic fibrosis is.

So what better day than Rare Disease Day to give you some facts on cystic fibrosis.

A rare disease is one that affects fewer than 200,000 people.

Cystic fibrosis affects around 70,000 people worldwide. It affects 10,600 people in the UK.

There are over 2,000 identified mutations of the cystic fibrosis gene.

Cystic fibrosis is a very complex condition that affects people in different ways. Even with the same mutation, no two CF patients will experience CF in the same way.

But there are many much rarer genetic conditions out there and I am grateful that there continues to be such great research and drug developments for those with cystic fibrosis.

It makes me hopeful for Arlo and his future.💙

And even though Arlo is only 7 months old, we are discovering that rare diseases/conditions have incredibly strong communities and together we will fight for our babies and our loved ones with CF. 💪