While you are welcome to read older content posted here, this website is no longer active. New websites exist for the Atypical HUS Foundation (USA), as well as for a few other nations. The aHUS Alliance (international advocacy in all countries) continues to expand, providing content and connections with the global aHUS website at www.aHUSallianceAction.org.
Multiple Facebook pages exist, and you can connect with aHUS advocacy…Continue
Added by Linda Burke on October 6, 2017 at 1:00pm — No Comments
2016 aHUS Awareness Day - 24 September
Information & Resources
The aHUS Alliance, an international group of atypical HUS patient organizations, has announced its 2nd annual global aHUS Awareness Day campaign will occur on 24 September 2016, dedicated to sharing information and insights into the extremely rare disease…Continue
Added by Linda Burke on August 29, 2016 at 10:00am — No Comments
24 September 2016 will mark the 2nd annual world aHUS Awareness Day. Patient organizations from around the world, in collaboration as the aHUS Alliance, have issued a press release providing details within an PRNnewswire,
From the 2016 August 24 Press Release:
"The aHUS Alliance invites all stakeholders to join together to promote visibility and to highlight insights and…Continue
Added by Linda Burke on August 24, 2016 at 7:50am — No Comments
The aHUS Alliance of patient organizations announced on 28 May 2016 the launch of an aHUS global website that will connect, inform and and encourage collaboration among stakeholders within the global aHUS community, for the benefit of all those affected by aHUS. Visit www.ahusallianceaction.org to view this portal of worldwide aHUS connectivity.
While national aHUS advocacy groups remain paramount for…Continue
Added by Linda Burke on June 6, 2016 at 3:04pm — No Comments
24 September 2016 is international aHUS Awareness Day.
This week the aHUS Alliance has announced the theme for the 2016 aHUS Awareness Day as 'Rising above aHUS', with an advocacy campaign symbol of a red balloon to unite messages worldwide. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and healthcare…Continue
Added by Linda Burke on May 31, 2016 at 9:34am — No Comments
The aHUS Alliance is pleased to announce that RareConnect will offer a webinar on 21 June at 11 am EST, with aHUS expert Dr. Christoph Licht to present analysis of the 2016 aHUS survey results. The aHUS global survey closed 15 April with 233 responses from 23 countries, responding in 6 languages.
Register here: …Continue
Added by Linda Burke on May 21, 2016 at 1:17am — No Comments
A worldwide survey of aHUS adult patients and pediatric caregivers was launched on Rare Disease Day (29 Feb 2016) and continued through 15 April 2016 to accommodate a rollout of survey translations in 6 languages. The survey premise was that patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective. A similar effort was conducted in partnership with RareConnect in 2014, with 214…Continue
Added by Linda Burke on April 30, 2016 at 11:30am — No Comments
The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference**, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel. Registration is limited, FMI see details at the Eventbrite registration site: http://ow.ly/4n2v06 . Questions about aHUS Family Conference? There is a direct way to “Contact…Continue
Added by Linda Burke on April 25, 2016 at 3:00pm — No Comments
In a 20 April 2016 press release, the Omeros Corporation has announced initiation of “patient dosing in its OMS721 Phase 2 program in corticosteroid-dependent renal diseases. The Phase 2 clinical trial of OMS721, the company's lead mannan-binding lectin-associated serine protease-2 (MASP-2) inhibitor being developed for complement-related diseases…”
From the Omeros press release, “This new trial expands the company's MASP platform,…Continue
Added by Linda Burke on April 21, 2016 at 11:30am — No Comments
2 DAYS LEFT – All aHUS adult patients and caregivers of pediatric aHUS patients worldwide are invited to participate in the
2016 global aHUS poll at http://ow.ly/YR8JK, survey available in 6 languages.…Continue
Added by Linda Burke on April 13, 2016 at 9:16am — No Comments
aHUS Global Survey – Open through 15 April 2016
Share your aHUS journey, survey in 6 languages (for aHUS Patients & Pedi Caregivers):…Continue
Added by Linda Burke on April 3, 2016 at 1:00pm — No Comments
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
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
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
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