Allison Watson

I live in the UK and have an adult son, David with Ring Chromosome 20 Syndrome, [r(20)]. I co-founded Ring20 Research and Support UK CIO in 2014 with my colleague Donald Gordon, to provide mutual support and information on r(20) syndrome to individuals, families and healthcare professionals who are affected by or come into contact with r(20). Ring20 supports over 60% of families living with r(20) worldwide and our community is constantly growing, despite a decline in diagnostic rates over the last 10 years. I was co-lead for the European Patient Advocacy Group (ePAG) for EpiCARE ERN for 5 years and a EURORDIS volunteer, and I spent a brief time as Programme Manager for Rare Disease International. As a patient advocate turned activist, I founded the UK Rare Epilepsies Together network (UKRET) – a collaboration between many epilepsy patient support groups across the UK who support families affected by rare and complex epilepsies, to see how we might work STRONGER TOGETHER in improving service delivery in the NHS and driving research. Due to a career change I dedicate my time (mostly on a voluntary basis) supporting patients and their families affected by rare and complex epilepsies, speaking at public events raising awareness and advocating for change. I am passionate about improving outcomes and am constantly seeking practical solutions and information to help families manage their condition on a day-to-day basis, alongside trying to raise funds for vital research. We may not have effective treatments TOMORROW, but I believe it is how we live our lives TODAY that matters and how we learn to cope.