RAREsummit19Talk synopsis & speaker profile
Co-founder, Ring20 Research and Support;
Deputy EPAG Coordinator for EpiCAREUK
Panel discussion: Patient groups partnering in the drug development process. Something for everyone?
Bio: I have a 22 year old son, David with Ring Chromosome 20 Syndrome, or r(20) for short – an ultra-rare epilepsy syndrome that doesn’t respond to treatment. I co-founded the patient support group Ring20 Research and Support UK CIO just over 5 years ago with Don Gordon, to provide mutual support and information on this rare disease to individuals, families and healthcare professionals who are affected by or come into contact with r(20). As a patient advocate, I am Deputy EPAG Coordinator for EpiCARE – the ERN for rare and complex epilepsies, working alongside my colleagues across Europe.