Kamal D. Shah, founder of Atypical HUS India, was honored this week as presenter of a keynote speech for the La Renon TANKER Foundation and his selection for their Sake of Honour Award. Kamal was diagnosed with atypical HUS in July 1997 at age 22, and received a donated kidney from his mother a year later. Little was known then about aHUS recurrence, and Kamal’s renal transplant failed within 11 days, requiring him to go back on peritoneal dialysis. In circumstances to rival any…Continue
Added by Linda Burke on January 28, 2016 at 11:30am — No Comments
Here’s a new way you can help our friends from Australia. In March 2016 there will be a meeting by the PBAC to determine if Soliris should be provided to aHUS patients who are on dialysis. You can send a personal submission to the PBAC to show your support of our Australian friends. We only have until Feb 10, 2016 to send them so please hurry and ask your family and friends to help. I listed my answers to some of the questions that you may have trouble thinking…Continue
Added by Jeff Schmidt on January 27, 2016 at 2:12pm — No Comments
Rare Disease Day is coming soon. This year is extra rare as the last day of February is the 29th.
For those who would like to participate in this year’s video project I’m…Continue
Added by Jeff Schmidt on January 12, 2016 at 8:00pm — No Comments
“The fight doesn’t stop until everyone is safe!” That’s what my friend from Australia, Sarah Mulligan said over a year ago when we were trying to convince the Australian health minister to fund Soliris for aHUS patients. That held true back then and it holds true now.
A big battle was won in Australia on December 17, 2015 when the PBAC recommended aHUS patients be allowed to continue…Continue