World Rare Disease Day, recognized annually on the last day of February, encourages patients and their families, medical professionals, researchers, government officials, and companies developing treatments for rare diseases to join together to focus attention on rare diseases as a public health issue.
On Saturday, February 28th 2015, Rare Disease Day will bring heightened attention to the challenges facing patients affected by approximately…Continue
Added by Linda Burke on February 27, 2015 at 12:56pm — No Comments
San Antonio TX, aHUS Meetup on March 13-14th
Global Genes just has extended the registration for their March 13-14th aHUS Meetup in SAN ANTONIO! Last day to register is now Friday,…Continue
Added by Linda Burke on February 25, 2015 at 3:30pm — No Comments
Big news came out of Australia in January! They have a new Minister for Health. Her name is Sussan Ley. This could be the break our Australian friends have been waiting for. A chance to get rid of the restrictions on access to Soliris. These restrictions include if someone is seen as in remission, they will not get it. They must relapse first. And anyone who started Soliris is only going to have access to Soliris for 12 months. They will need to relapse to in order to…Continue
Added by Jeff Schmidt on February 23, 2015 at 7:00pm — No Comments
NORD, the National Organization of Rare Disorders, has announced plans for their regional aHUS meetings across America for 2015.
The National Organization for Rare Disorders invites patients and caregivers/families affected by Atypical Hemolytic Uremic Syndrome (aHUS) to participate in these special events to meet other patients and speak with a medical expert. Come together in a small…Continue
Added by Linda Burke on February 20, 2015 at 11:30pm — No Comments
Omeros, the manufacturer of OMS721, just released preliminary data this morning on the first three patients to be treated with OMS721.
Although the trial is open to patients with various types of thrombotic microangiopathies (TMA), the first cohort of 3 patients at the lowest dose all had aHUS.
All patients had improvements in platelet counts. LDH and…Continue
You can’t miss the first 2 aHUS Meetups hosted by Global Genes – San Antonio on 3/14 and Pensacola FL on 3/28. Why?
Dr. Rita Swinford , an aHUS medical expert, will give a presentation and then answer your questions in San Antonio, on March 14th. Come share with friends, as Diane Schaller represents The Atypical HUS Foundation with her Saturday presentation in San Antonio and Anne Bruns shares her family’s aHUS journey at the Friday night welcome…Continue
Im just enquiring for some of our members in Australia that are asking if i know of anyone getting pregnant after diagnosis either on or off Soliris... what are doctors recommendation around this? Thanks Kerri XX
Global Genes invites patients and caregivers/families affected by atypical Hemolytic Uremic Syndrome (aHUS) to participate in a series of 16 special regional events to meet others in the aHUS community and to hear a presentation with a physician experienced in aHUS diagnosis and treatment. These aHUS Meetups will provide an opportunity for you to connect with other families challenged by atypical HUS, and to share…Continue
Added by Linda Burke on February 9, 2015 at 10:30pm — No Comments
Only a few short weeks remain until global Rare Disease Day on February 28th! Join with others in the aHUS community to highlight the challenges that face the 1 in 10 Americans diagnosed with a rare disorder.
The Atypical HUS Foundation needs your help with 2 innovative awareness projects! Alyssa Deffenbaugh is creating a video, aHUS Across America, to illustrate the many faces of aHUS patients, families and advocates. BUT…Continue
Added by Linda Burke on February 4, 2015 at 8:23pm — No Comments
We’ve been helping our aHUS friends in Ontario Canada by sending their Health Minister Dr. Eric Hoskins emails with stories of how Soliris has worked for us. Dr. Hoskins had responded to a post I made on his Facebook page a while back by saying he is looking for evidence that Soliris works for aHUS like it does for PNH.
Now that we have given him the evidence he needs via our emails, I’m asking that you go to his Facebook page and leave a post for him…Continue
Added by Jeff Schmidt on February 2, 2015 at 1:19pm — No Comments