Have you heard about the OPEN ACT (Orphan Product Extensions Now Accelerating Cures & Treatments), and its implications for increased treatment options for patients challenged by a rare disease diagnosis? Did you know that last week the 21st Century Cures legislative initiative was unanimously approved by the House Energy and Commerce Committee in Washington DC? Current events in rare disease policy and…Continue
Added by Linda Burke on May 26, 2015 at 10:00pm — No Comments
Hi guys! I'm sorry that I have not been super active on the pages, life as we all know it has been crazy and very fast moving! I have gotten many emails over the past couple months, many from people asking how I am doing now, so I feel that it is only fair and appropriate to provide some updates as to where I am today.
The last time that I wrote, I was a manager at a store called Chicos. I have since put in two weeks (months ago) and am currently a full time employee at an…Continue
Added by Diane schaller on May 19, 2015 at 10:41pm — No Comments
I’d like to introduce you to Stefan Persson. He lives in Sweden and is the founder and President of the Swedish aHUS support group Ahus-ffii. This group was started during the summer of 2014.
In 1993, Stefan had a daughter who got sick with aHUS (though diagnosed with TTP-HUS)…Continue
Added by Barbara Farcher on May 18, 2015 at 11:35am — No Comments
Florida has been “HOT” on the Meet-up Tour this year with locations in Pensacola, Tampa and Orlando.
My 8 year old son (Tyler) was diagnosed 14 months ago-- so Tampa was my first aHUS Meet-up experience. I did attend the Iowa conference last Fall, but they couldn’t be more different. The small group setting of the Meet-ups is unique. Sharing your family journey with others brings out a lot of raw emotions, but the mental healing that comes with it is important.
Added by Lisa Grooms on May 17, 2015 at 8:14pm — No Comments
As summer approaches, so do more opportunities to learn about aHUS and to connect with other aHUS patients, caregivers, and family members! You are not alone, and support is as close as tapping your keyboard to join the aHUS community, and to learn about resources currently in place to help ease your mind and lighten your heart.
Safe travels to those attending this weekend’s aHUS regional meeting in Pittsburgh this weekend May 15-16th, hosted by…Continue
Added by Linda Burke on May 15, 2015 at 6:30am — No Comments
The Atypical HUS Foundation is honored to present this review of a key article that appeared in Pediatric Nephrology in Feb. 2015. Written by consensus among 20 leading clinicians and aHUS investigators from around the world, this document gives detailed information of interest to aHUS families and to physicians who treat aHUS patients (with particular interest regarding pediatric patients). As one of the 20 authors, Dr. Carla Nester of the University of Iowa was kind…Continue
Every year from May 6th - 12th the American Nurses Association celebrates National Nurses Week. My favorite quote honoring nurses is, "You heal sometimes. You relieve often. You comfort always." Camus.
Added by Linda Burke on May 6, 2015 at 12:00am — No Comments
The Atypical HUS Foundation couldn't be more excited to announce 2 new board members coming on 'board' effective July 1, 2015! Let us first say how impressed and blessed we are with the quality and quantity of great candidates - what an embarrassment of riches! We truly feel like this is just a first step towards expanding our leadership pool and opportunities as the Foundation moves into a…
I just wanted to remind everyone that the regional meet up in New Orleans is coming up June 5-6th in New Orleans. The deadline for registration is May 22nd. Can't wait to see some of you there! Come for the wonderful information, come for the food, come to experience the wonderful city! Unfortunately, my family's time here is coming to an end, but we love it here & I can't wait to share our experience with aHUS with those of you who can make it! I can't wait to meet new friends and…Continue
Added by Paula Blanchard Lamigo on May 3, 2015 at 2:50pm — No Comments