The Center for Life at Newcastle upon Tyne, UK, is organizing a conference for patients and their family on atypical Hemolytic Uremic Syndrome on Saturday, June 11th. This is a great initiative by Dr. Tim H. Goodship, whose lab found out that I had the CFH/CFHR1 hybrid gene due to which my kidneys failed and my transplant did not work out.
Dr. Goodship is one of the world's leading researchers in atypical HUS and it is great that he is organizing this conference. So little is known about this disease that patients and their families are often grappling with ignorance alongside the disease itself.
The conference will cover the basics of the disease, the complement system and treatment options including liver transplants and eculizumab. The conference is also going to set up a support group for patients and their families in the UK. More details can be found here .