As patients and caregivers we often wonder what constitutes the best standards of care and monitoring for aHUS patients. With most diseases or disorders, physicians often rely on ‘best practice’ protocols developed by medical experts, adding further meaning to such standards with education provided by their training, experience gained in practice, and information supplemented by ongoing/updated professional development (e.g. medical conferences). When a…Continue
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…Continue
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…Continue
Added by Jeff Schmidt on November 18, 2015 at 7:08pm — No Comments
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…Continue
Added by Phyllis Ann Talbot on November 16, 2015 at 2:38pm — No Comments
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…
Added by Jeff Schmidt on November 2, 2015 at 8:00pm — No Comments
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…Continue
Added by Anne Bruns on October 29, 2015 at 8:12am — No Comments
Do you know the story of your fellow aHUS friend?
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…Continue
Added by Linda Burke on October 21, 2015 at 12:00pm — No Comments
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!
Added by Phyllis Ann Talbot on October 19, 2015 at 5:48pm — No Comments
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…Continue
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.…Continue
Added by Linda Burke on October 17, 2015 at 9:00pm — No Comments
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…Continue
Added by Linda Burke on September 27, 2015 at 3:48pm — No Comments
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…Continue
Added by Linda Burke on September 24, 2015 at 1:30pm — No Comments
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…Continue
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,…Continue
Added by Linda Burke on September 17, 2015 at 10:00am — No Comments
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.
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…Continue
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…Continue
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…Continue
Added by Linda Burke on August 28, 2015 at 11:30pm — No Comments
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…Continue
Added by Jeff Schmidt on August 24, 2015 at 7:30pm — No Comments