The Atypical HUS Foundation

All Blog Posts (980)

Global aHUS Experts Meet in Barcelona at KDIGO Conference on Kidney Disease

     Tonight began the KDIGO Controverseries Conference on Complement-Mediated Kidney Disease, held November 19-21 2015 in Barcelona Spain.   The opening reception was a Who’s Who in the global world of aHUS researchers and clinicians, so I was both humbled and honored to speak with these world class aHUS experts from nations all over the world to include Italy, France, the UK, Germany, Sweden, the Netherlands, Turkey, India, China, and the UK. View the full…

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Added by Linda Burke on November 19, 2015 at 5:00pm — 5 Comments

Tell the Pharmaceutical Benefits Advisory Committee (PBAC) to Recommend Soliris for Australians with aHUS

Our friends from AHUS Patient Support Group Australia (aPSGA) met with Alex Best from the office of Health Minister Sussan Ley to discuss the policy that will force those who started Soliris back on December 1st, 2014, to stop at the end of November to "see what happens".  The meeting seemed to go well and they asked him to postpone taking people off drug at this time of year since there is less staff available over Christmas and it is not an ideal time…

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Added by Jeff Schmidt on November 18, 2015 at 7:08pm — No Comments

Amazing time in Atlanta this weekend

I had such a great time at the Atlanta Meet up this past weekend!  Got to meet new friends and reconnect with old ones.  It's always so great to hear all the different stories and be impressed once again with how great of a community we have!  Loved hearing Dr. Swinford's medical talk - each doctor explains things just a little bit differently and I learn something new every time.  It was also very cool to hear our very own case manager Kim Chiarella represent One Source and so great to put…

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Added by Phyllis Ann Talbot on November 16, 2015 at 2:38pm — No Comments

Please Help Our Friends in Australia Who Desperately Need Soliris

Our friends in Australia who started Soliris treatments last December 1st are about to lose access to those treatments at the end of November.  Please send their Health Minister Sussan Ley an email like the one below to show your support and to put pressure on.  Feel free to copy the exact email but replace my story (in red) with your personal story.  Your personal story just may be the one that makes a difference!



And please sign the petition that will…

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Added by Jeff Schmidt on November 2, 2015 at 8:00pm — No Comments

Pediatric Adventure in Orlando

Earlier this month, Ethan and I had the incredible opportunity to travel down to Orlando for the first aHUS pediatric event. This was for patients ages 10-18 and one parent. We arrived late Friday night and were treated to a delicious dinner with all the attendees, One Source case managers, Alexion and Global Genes staff. Upon arrival we were all given bags with items for the weekend and in the kids bags were the most adorable stuffed Husky dogs. Each patient got their own aHUSky named…

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Added by Anne Bruns on October 29, 2015 at 8:12am — No Comments

The "aHUStonishing Heroes" Project

Do you know the story of your fellow aHUS friend?

Do…

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Added by Donna Kolp on October 28, 2015 at 6:22pm — 2 Comments

Invisible Disabilities Week, Oct 18-24th

It’s Invisible Disability Week !

     Atypical HUS seems to throw a variety of challenges our way.  Accurate and quick diagnosis is difficult for such a complex and rare disease, with  informational resources often not readily available from the medical community to aHUS patients and caregivers.  From the patient or family viewpoint, a compounding factor can…

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Added by Linda Burke on October 21, 2015 at 12:00pm — No Comments

November 14th in Atlanta!!!!

Who am I going to get to see in Atlanta in a few weeks?  Excited to see new folks and old friends at the Atlanta meet up?  Make sure to sign up today!  Also excited to hear a new medical perspective - every doctor explains things just a little differently and a little more sinks into my skull each time! 

Cant wait to see you all!

https://globalgenes.org/ahus-registration/

Added by Phyllis Ann Talbot on October 19, 2015 at 5:48pm — No Comments

The Australian Government is Going to Stop Soliris Access After 12 Months to "See What Happens." Let's Tell Them No!

December 1, 2014 marked a very important day in Australia.  That was the day their government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia.  This has saved lives.  But according to policy, those who started Soliris last December will be forced to stop their treatments at the end of November (after 12 months) unless their aHUS is active.  That will likely be everyone as Soliris effectively…

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Added by Jeff Schmidt on October 18, 2015 at 1:00pm — 1 Comment

aHUS Mutations and C3, a Research Article

Check out this article, written by some of the most highly regarded aHUS ‘top docs’ from around the world:

Mapping interactions between complement C3 and regulators using mutations in atypical hemolytic uremic syndrome.…

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Added by Linda Burke on October 17, 2015 at 9:00pm — No Comments

aHUS Regional Meetings, Only a Few Left in 2015!

     As fall begins, new opportunities to learn and connect are still ongoing in the aHUS community across America.  The latest aHUS regional meeting was hosted by NORD in Chicago on Sept. 18-19th, with the highlight being a presentation by aHUS medical expert Dr. Bradley Dixon of Cincinnati Children's Hospital Medical Center.  Dr. Dixon’s presentation was clear and concise, but especially valuable and appreciated was Dr. Dixon’s willingness to answer questions from the…

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Added by Linda Burke on September 27, 2015 at 3:48pm — No Comments

Sept 24th - Today is international aHUS Awareness Day!

     It’s the 1st ever international aHUS Awareness Day around the world!  September 24, 2015 is marks the inaugural launch as a global day designated to add visibility to those challenged by the very rare disease atypical HUS and sponsored by the aHUS Alliance. 

     Key projects for the 2015 aHUS Awareness Day campaign included:

      * A PRNewswire announcing this special day of recognition for aHUS patients, their issues, and various…

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Added by Linda Burke on September 24, 2015 at 1:30pm — No Comments

aHUS Awareness Day, September 24, 2015 Outreach Project

Americans, by now you realize the first ever aHUS Awareness Day on September 24, 2015 is fast approaching.  We have another project for this special day (or any day you’re available) that we’d like to see everyone get involved in.

 

For this project, Alyssa Deffenbaugh and I would like everyone to take the aHUS fact sheet provided by the aHUS Alliance and find at least one person that…

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Added by Jeff Schmidt on September 18, 2015 at 1:30pm — 3 Comments

Be an aHUS Advocate - Sept 24th is aHUS Awareness Day

     Help make the issues and needs of the aHUS community visible - join others from around the world to send messages that provide insight into the challenges faced by atypical HUS patients.

You alone can best describe the impact of aHUS on your life and your relationships. Who better to explain the many challenges of dealing with aHUS treatment while working, being a parent, or struggling with financial and emotional issue?  Since aHUS is a complex and rare disease,…

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Added by Linda Burke on September 17, 2015 at 10:00am — No Comments

One year anniversary

It will be one year next month that I started treatment with Soliris for aHUS.   My oncologist is researching my stopping treatments.  Has any other member stopped their infusions.

Added by Lynda Swope on September 7, 2015 at 1:41pm — 3 Comments

aHUS Awareness Day, September 24, 2015 Kids Project

Hey Americans!  We have another project for the first ever aHUS Awareness Day on September 24, 2015.  Alyssa Deffenbaugh and I have been working together through the Atypical HUS Foundation on ideas for this special day.

For this project, Alyssa came up with the brilliant idea of getting the kids involved.  She would like them to draw a picture that shows what it means to be healthy or maybe how they feel about having…

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Added by Jeff Schmidt on September 2, 2015 at 3:17pm — 1 Comment

Sept 24 Marks the first aHUS Awareness Day!

 Join In - 1st  annual aHUS Awareness Day, set for Sept 24, 2015!

     The aHUS Alliance is an international federation of 14 nations dedicated to promoting aHUS advocacy around the world.  On 24 September 2015, help us raise visibility for patient needs and issues by joining in to post, blog, and Tweet about the aHUS community.

     Between now and aHUS Awareness Day, you’ll see…

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Added by Linda Burke on September 1, 2015 at 5:30pm — 2 Comments

aHUS Alliance reports on the July 2015 Innsbruck Conference

     As part of its mission to work with International aHUS researchers, the aHUS Alliance was represented by Len Woodward (UK rep. to the aHUS Alliance federation of nations, from aHUSUK) at the 5th HUS International HUS and Related Diseases Conference in Innsbruck.  His report, Continuing to Learn about aHUS, is of high interest to the aHUS community worldwide as…

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Added by Linda Burke on August 28, 2015 at 11:30pm — No Comments

aHUS Awareness Day, September 24, 2015 Video Project

Calling all Americans!  The first ever aHUS Awareness Day is coming up fast.  It is September 24, 2015.  The world is joining together that day to raise awareness for aHUS.  

The global theme for aHUS Awareness Day is ‘Communication’.   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…

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Added by Jeff Schmidt on August 24, 2015 at 7:30pm — No Comments

Columbus, Ohio Atypical HUS Meetup

Wow! That is all I can say after an incredible weekend in beautiful Columbus, Ohio with some of the greatest people I know - aHUS family! This was by far the largest meetup I've been to that was sponsored by Global Genes. Friday night was a delicious dinner with great conversation at each table. I was excited because I didn't know any of the attendees from beforehand. I met wonderful people of all ages and life experiences all brought together by one crazy life changing diagnosis. Each table…

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Added by Anne Bruns on August 24, 2015 at 3:26pm — No Comments

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