Helen Lill

I’m Helen Lill, and I’m the founder of the EI cure project. I’m from the UK, and spent 20+ years working as a therapeutic radiographer (Radiation technician) and research radiographer in the UK National Health Service. Throughout my many roles over the years in the UK, I had the honour of working as an advisor on a European policy board, I was part of a UK National mentorship scheme to help other UK hospitals adopt new and innovative radiotherapy techniques, and I had the opportunity to present my own research work at numerous radiation-oncology conferences around the world. My day-to-day job involved delivering clinical treatments, managing treatment teams, liaising with the multidisciplinary team, health services research, writing protocols and standard-operating-procedures, project management, and clinical education for a large radiotherapy department with a daily throughput of 300 patients, an annual turnover of 7000 new patients, and a team of 120 radiographers.

Following this I moved to Switzerland with my husband and became the head of a radiotherapy clinic here. I have a Bachelor's degree in Radiography, a Masters Degree in Health Services Research, and more recently a Post-graduate Diploma in Genomic Medicine and Healthcare. Healthcare, research, and patient advocacy are my true passions in life, and finding ways to make treatments better, safer, and more innovative have always been key goals for everything I do.

Following the birth of our third child with KRT10 EI, I made it my mission to do the best that I could for her, but also to use all of my healthcare, research, and project management experience to find a cure for her and to help others gain better access to better care wherever they may be in the world. I learned very quickly that with rare diseases, nothing will change without a parent or affected individual to champion that goal. So, here I am trying to do just that, and alongside all the wonderful, and courageous other families that I’ve met throughout our EI journey, I know that we can make a difference together, and we are collectively determined to find a cure for EI.