Information about rare disease research and studies can be difficult to unearth, so a key component of our efforts at www.atypicalhus.org is our commitment to act as a hub connecting information and resources for aHUS patients, families, and caregivers. Our Atypical HUS Foundation is dedicated to providing an objective, independent network of information…Continue
Well, you should…..if you have any interest in the needs and concerns of aHUS patients, caregivers, and families. Our foundation is an independent, non-profit organization dedicated to providing information, insight, and support to all those challenged with this rare disease. We serve patients of all ages and provide a networking hub for aHUS information across the United States and throughout the world, acting as a ‘founding community’ for…Continue
Life is tough. High school is tough. Both can be even tougher when you fight a disease such as aHUS.
I was home schooled for most of my education. I liked it, but there came a time when I wanted to enjoy my high
school years. I wanted to go to football games, meet people that would become life long friends. This was a huge
step for anyone, and it was huge for me.
I am on dialysis, and have been since I was 4. When I started going to high school, I was on PD, which…Continue
Just up from this new activity box there is a video of Prof. Judith Goodship. Standing next to her is Sean who Tim Goodship referred to in his recent webinar as being a survivor of a family blighted by aHUS and which led him to research aHUS and discover the Complement Factor H mutation. Sean has been on dialysis for 25 years but has recently had a successful transplant, supported by eculizumab. He is a Geordie and lives in Newcastle upon Tyne ( my profile pic is taken on the Tyne Bridge!)…Continue
The University of Iowa and the Foundation for Children with Atypical HUS announce the 2014 aHUS Family Conference to be held at the University of Iowa on October 24-26, 2014.
JOIN US for the only aHUS conference in the United States to offer multiple medical presentations from 6 aHUS experts and covering high-interest topics such as mutations, disease…Continue
Added by Linda Burke on August 6, 2014 at 9:00pm — No Comments
On July 31st, the global aHUS community was invited to participate in ‘real time’ with a webinar offered by Dr. Tim Goodship, a world leader in aHUS research. Hosted by EURORDIS, and offered on the RareConnect’s dedicated aHUS global webpage, Dr. Goodship gave a comprehensive overview of aHUS information. …Continue
Added by Linda Burke on August 4, 2014 at 12:46am — No Comments