I am one of around 3.5 million people in the UK who lives with a rare disease.
Since my diagnosis in 2013, I have been lucky to have the care of our wonderful NHS, as well as the never-ending support of my family, friends and employers. They have allowed me to live as normal a life as possible and for that I am incredibly grateful.
But some aren’t as lucky as me. Many people struggle for much longer without a diagnosis, and some don’t get one at all.
While we have made significant advances over recent years, my own experience has shown me there is still so much to be done to improve the experience of patients with rare conditions.
That’s why today I am launching a National Conversation on Rare Diseases.
We want to talk to patients, families and carers, healthcare professionals, researchers and industry to capture your views on the big, strategic issues. Drawing these together will help us to develop a robust and compelling strategic framework to improve care for people with rare diseases.
Of course, it won’t address every challenge – but it will be an ambitious attempt to build on our world-leading commitments, set out in the 2013 UK Strategy for Rare Disease.
To start this conversation, we have set up a major online survey, which will be a chance to give your view on what you feel are the major challenges faced by people living with rare diseases.
Whether you’re a patient, family member or carer, industry or clinical specialist, GP, nurse, or other clinician, I want as many of you in the rare disease community to tell us through this survey about the biggest challenges you face, and have your voices heard.
We want to hear from as many people as possible – so I urge you to share the survey link far and wide to those who should know about it.
Your feedback will help us to develop a framework for rare diseases that tackles the most pressing barriers for improving the lives of those living with rare diseases – so the diagnostic odyssey no longer exists, patients and clinicians know far more about rare conditions, and care is of the highest standard possible.
I know how important this is to so many people and I am committed to advocating on your behalf and bringing this community with me as we drive forward the Government’s work on rare diseases.