Hannah Langford

Tell us about your experiences of rare conditions:

I have Ullrich Congenital Muscular Dystrophy, which was diagnosed when I was 10 years old. Our world was turned upside down with this diagnosis, but it allowed my family to get the support necessary to understand my condition and put all the necessary elements and structures in place to enable me to thrive at school, university and beyond. My experiences of rare conditions so far have taught me that healthcare can be transformative, but only if it is delivered in the right way and by those who understand a patient’s unique needs and situation. Sadly, too often people rely on a one-size-fits-all approach.

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

I applied to join the ‘We R Rare’ Steering Group because I am passionate about advocating for others. I love engaging with other people and learning from them, taking on board their views, whilst also being able to share my own opinions. As someone with a rare condition, I have often felt left out when it comes to conversations about health and care. It is a privilege to use my lived experience to, in a small way, help those with rare conditions have a voice.

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

In the future, I would like everyone with a rare condition to receive specialist care tailored to their needs as a matter of course, rather than having to fight for it, and for there to be no more ‘postcode lottery’. There should be greater understanding and awareness of rare conditions by healthcare professionals, so that individuals don’t have to wait as long for a proper diagnosis and, therefore, for the care that they need. I also hope that healthcare will become much more holistic, rather than the current piecemeal approach where nothing is joined up.