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 When?         Saturday 7th September,  10am - 4:30pm
 Where?        Surgeons Hall, Nicholson St, Edinburgh EH8 9DW
  • Learn more about Alport Syndrome with Kidney, Genetics, Organ transplant, Hearing and Sight experts
  • Put your questions to the medical team
  • Find out about the experiences of others living with Alport Syndrome
  • Meet individuals and families in similar situations and share your experiences

Our meeting is going to be held in Surgeon's Hall on Nicholson Street in central Edinburgh, just a short walk from Waverley station. The day will feature a number of short talks on different aspects of the disease and lots of opportunity to talk to others and ask questions. Lunch will be provided as well as activities for children. There will be a spearate workshop for teens and young adults. The event is free for all.

This patient information day is organised by the Alport Disease Patient Group, who held a very successful similar patient day in London in December, attended by over 100 patients, family members and friends. 
Feedback from the Alport Support Day September 2012:
"The day has been amazing, we are so glad we came and that the day has been possible. We no longer feel alone."
"It has been nice to meet other people in a similar circumstance and professionals who can explain things without google."

Outline programme for the day


Coffee & Registration
Welcome, introductions

Short talks

What is Alports?                                         Neil Turner
A patient's story                                        Mark Hewitt
Genes & genetic testing                         Frances Flinter
About kidney transplants                            John Casey

Short talks

Why join a registry?                                   Neil Turner
What Alport's means for families                  Susie Gear
Hearing and hearing aids                 Stamatia Staikoudi


Q&A and Feedback


Please contact or call 01793 847264 - these are the contact details for the UK Patient Group.

Except for Edinburgh patients - if you are local, please contact us at or call 0131 242 9167 (leave your name and number)


Download a flyer  




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This page last modified 03.09.2013 16:27 by Emma Farrell. edren and edrep are produced by the Renal Unit at the Royal Infirmary of Edinburgh and the University of Edinburgh. CAUTIONS and Contact us.