Louise Dalgleish

Tell us about your experiences of rare conditions:

I was diagnosed with Fanconi anaemia (FA) and aplastic anaemia at age six in 2007. I underwent a bone marrow transplant in 2012 and continue to manage living with FA. I have been involved with Fanconi Hope, a charity supporting individuals living with FA in the UK & Ireland for many years and I’m now an FAdult council member with the US charity- Fanconi Cancer Foundation. My experience of living with a rare genetic disease has affected my independence, education, relationships and career.

Why did you put yourself forward to join the We R Rare Steering Group:

I’m passionate about patient advocacy and joining We R Rare has given me another opportunity to communicate with clinicians and researchers to establish a better understanding of the challenges we face daily and how clinical care can impact this.

What would you like to see changed in the future of rare conditions? 

In the future I would like to see an improvement of how individuals with rare conditions are treated in A&E and initial appointments. I hope to see a change in how hospitals can provide better patient communication when being seen under multiple hospitals and departments. I’d like to see structured care plans for individuals with rare conditions so we aren’t left between the cracks.