Allison Watson, mum to David age 25 with Ring Chromosome 20 Syndrome, is the co-founder/CEO for Ring20 Research and Support UK CIO which was setup to address the needs of those living with r(20) syndrome. It is a difficult to diagnose ultra-rare epilepsy with no recommended treatment, no patient registry, no clinical guidelines, no prognostic information and very limited research. The organisation supports families and provides information to healthcare professionals worldwide. Allison recently founded a new collaborative, UK Rare Epilepsies Together (UK RET) bringing together UK charities that support people with rare epilepsies and is co-lead for ePAG EpiCARE ERN for rare and complex epilepsies. Allison has recently been appointed as Project Manager for RDI to support the CGN initiative. As a EURORDIS volunteer Allison is passionate about what can be achieved within the rare disease community believing all rare diseases, including the rare epilepsies, should coexist 'on the radar' for clinicians, researchers, pharma/industry and strive for equity for all. Advocating for an ultra-rare disease using her experience as a caregiver has taught her that you can create your own destiny, whether that is how you choose to live your life with your rare disease as an integral part of that, or how you can make change happen through championing your cause. Not all rare diseases are equal and not all have treatments on the horizon, or the research to inform science for new therapeutic discovery. As a realist, Allison is constantly seeking practical solutions and information to help families cope with living with their condition on a day-to-day basis, alongside trying to raise awareness and funds for much needed research. We may not have effective treatments until TOMORROW, but Allison believes it is how we live our lives TODAY that matters and how we learn to cope.