1. 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 am pm
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