The 5th National Alport Information day Agenda Introductions Be prepared with a few words to introduce yourself at the beginning of the event, so we can meet everyone, including: Your name and nearest village/town A short sentence (8 words) about one of the interesting or fun things you did in 2016. Short talks with questions and answers An introduction to latest research – Rachel Lennon Summary of basic science research – Michael Randles Break – panel of experts - Experts available to answer your questions on genetics, kidneys, hearing and eyes What happens in a clinical trial - Danny Gale Lunch Regulus Therapeutics: Athena and Hera studies – Christa van Kan Reata Pharmaceuticals: Cardinal study – Sharon Cousin Role of RADAR registry – Neil Turner Break – panel of experts and networking Update on Health Matters website – Melissa Stepney Update on eye research – Omar Mahroo Tips on how to keep healthy for ‘carriers’ – Frances Flinter Working with alport uk to educate people on Alport Syndrome – Susie Gear Saturday 7 January 2017 9.30am - 5.30pm Westminster Boating Base, 136 Grosvenor Road, Pimlico, London, SW1V 3JY Travel bursaries available if your journey costs more than £20 (with receipts) Lunch will be provided as well as activities for children. There will be a separate group for teens and young adults. An informal event created by those living with Alport Syndrome and supported by: Registered charity number 1154774