The following blog was originally posted on the RareConnect global aHUS webpage:
Update: MARCH 30, 2016
NEW - Survey now in 6 languages, with survey end date extended until April 15, 2016 !
There are new 2016 aHUS global survey…Continue
Added by Linda Burke on March 17, 2016 at 12:30pm — No Comments
Hi ! Just hoping someone sees this and has some sort of idea as to what I am talking about. I was diagnosed with atypical HUS June 2015. Since then my kidneys have been improving but I have INTENSE left side pain. It is right below my left kidney. After ct scans, getting my appendix removed and ultra sounds. No one is finding a reason for my pain. I am so frustrated. I am learning what I can about AHUS but does anyone have chronic pain with this disease?
The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February). A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations and responding to outreach in 6 different languages. The 2014 poll included questions on common themes familiar…Continue
Added by Linda Burke on March 8, 2016 at 9:00am — No Comments
The Atypical HUS Foundation is most pleased to announce the expansion of the Doc to Doc Directory, adding three new volunteer physicians, all highly experienced in multiple and specialized aspects of atypical HUS, to our listing providing free consultation via email or phone to fellow doctors worldwide. Our deepest thanks to all volunteers on the Doc to Doc Directory physician…Continue
Added by Linda Burke on February 8, 2016 at 12:30pm — No Comments
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
Ushering out the old and ringing in the new! The New Year holds promise to be an exciting year, filled with innovation and opportunities within the aHUS community in America and beyond! Not that 2015 was dreary, as a matter of fact it proved quite the opposite.
In 2015 there were 20 aHUS regional meetings schedules across the USA, hosted by NORD and Global…
Added by Linda Burke on December 28, 2015 at 12:00am — No Comments
As 2015 draws to a close, it seems likely that 2016 will bring progress in complement therapeutics development toward clinical use. Since a hallmark of aHUS is chronic, uncontrolled complement activation, we’re looking forward to what happens in a rapidly moving field which seems promise advancement soon. (FMI Click Here) As with eculizumab (Soliris ®, from Alexion Pharmaceuticals), we likely will see clinical trials…Continue
Added by Linda Burke on December 27, 2015 at 9:00pm — No Comments
As we approach this holiday season, Jana Dodd, reminds us to "Count Your Many Blessings".
In our aHUS community, we often appreciate more of the small things, the mini milestones, and the everyday accomplishments. This is such a gift that we have be given. Everyday is a blessing.
With that said, our first aHUStonishing hero is the sweet Eliza.…Continue
Added by Donna Kolp on December 20, 2015 at 2:54pm — No Comments
Hey everybody, It's been a long time since I've provided an update on how things are for me so I wanted to take some time to do that. This last quarter of the year, has undoubtedly been the hardest for me since being diagnosed. I've held on to faith and hope that treatment would keep me going but my circumstances have been less than ideal.
I just ended my (hopefully) last fall semester of college, and it definitely gave me a run for my money. In October I was asked to be a…Continue
Added by Megan Russo on December 17, 2015 at 5:50pm — No Comments
Earlier this December I was honored to attend the ASH (American Society of Hematology) conference. I was blown away by the amount of people who attended and humbled to speak with doctors to gain information on the newest technologies for aHUS. The first day there we had a lot of doctors from other countries approach our booth who did not have access to treatment. The remainder of the event we had many doctors and researchers approach us that did not know the foundation existed. Overall, ASH…Continue
Added by Megan Russo on December 17, 2015 at 4:03pm — No Comments
Just recently I was asked to tell my story and speak on behalf of the atypical HUS Foundation at the Phoenix meet up.
My husband and I are from the Dallas Texas area, so we flew out to Phoenix first thing Friday, December 4. We got checked into our hotel and attended the dinner provided by Global Genes. During the dinner, we had an "ice breaking" type activity. The goal was to introduce yourself to the group, tell where you are from, and tell an embarrassing story about…Continue
Added by Amber S Schlaht on December 16, 2015 at 11:56am — No Comments
Achillion Pharmaceuticals, Inc. distributed a press release on the first day of the American Society of Hematology meeting which was held December 5-8, 2015 in Orlando Florida. In their December 5th 2015 press release, they announced that their company would present information regarding Achillion’s small-molecule factor D inhbitors at the 57th Annual Meeting of the ASH.…Continue
In a Dec 5, 2015 press release, Akari Therapeutics announced that they will present new data about the efficiacy of Coversin in eculizumab resistant patients at the 57th American Society of Hematology (ASH) Annual Meeting taking place in Orlando from December 5-8.
Coversin inhibits complement C5 activity, and is described…Continue
Alnylam Pharmaceuticals has announced that Alnylam scientists and collaborators will present at ASH the new results from ongoing clinical studies, to include a poster session of particular interest to the aHUS community. One of its two of its subcutaneously administered investigational drugs, ALN-CC5, currently being explored within the context of paroxysmal…Continue
Added by Linda Burke on December 4, 2015 at 3:30pm — No Comments
Ra Pharmaceuticals announced today the launch of a Phase 1 study of its C5 complement inhibitor RA101495. From the…Continue
iGive.comiGive.com Taking advantage of Cyber Monday deals or doing holiday shopping online? Sending flowers for the holidays? Booking holiday, work, or vacation travel? The Atypical HUS Foundation supports multiple aHUS education and outreach efforts across America and beyond,as well as issuing an annual call to aHUS researchers seeking grants for projects of direct benefit to aHUS…Continue
Added by Linda Burke on November 29, 2015 at 1:00pm — No Comments