This was such a wonderful weekend and a great experience in Baltimore for those in attendance at the meet-up. I was lucky to meet a few other patients, and some amazing caregivers. I'm always so blown away by the sense of community we all have and how much we all have to bring to the table. The hotel was beautiful, and I had never been to Baltimore, so it was exciting to finally get to see the great city!
Friday we had dinner, which was delicious! We also got to hear Diane…Continue
Added by Alyssa Deffenbaugh on July 28, 2015 at 12:16pm — No Comments
News in the Biotech and Orphan Drug Arena
Based in Cambridge Massachusetts, Ra Pharmaceuticals, notes complement inhibitors and other immune targets among their Current Programs. It appears that PNH (Paroxysmal nocturnal hemoglobinuria) patients are Ra’s immediate targeted patient population, with RA101495…Continue
Added by Linda Burke on July 26, 2015 at 4:00pm — No Comments
Lou-Anne is grafted for 4 years (july 15th). What a joy to have a little girl since grown normally and is in top form.
A July 23, 2015 PRNewsire from Omeros Corporation has announced the U.S. Food and Drug Administration’s action to grant Fast Track designation to OMS721, their MASP-2 drug currently in clinical trial for aHUS patients.
“FDA's Fast Track designation of OMS721 for aHUS reflects the unmet need associated with this disease and recognizes the drug's potential as an important option for the…Continue
Added by Linda Burke on July 23, 2015 at 4:30pm — No Comments
Two weeks ago about 30 of us gathered on the MIT campus in Cambridge, MA for the Global Genes meetup. It was my third meeting in three years, but my first local one. I was thrilled to present as a Patient Advocate on behalf of the Foundation. My husband and I were there for our son, Jack, who presented eight years ago at age 13 (he did not attend).
This was a first time event for many attendees.The majority of attendees were patients themselves, and all adults at time of diagnosis.…Continue
Dr. Wynne Weston-Davies of Volution Immuno Pharmaceuticals presented information on potential new aHUS therapeutics at the June 28th meeting of the aHUS Alliance convened in London. Volution is a privately held, Swiss-based firm whose focus is development of anti-complement and anti-inflammatory molecules that may be utilized for the treatment of a wide range of rare diseases. Dr. Weston-Davies…Continue
On Sunday morning, June 7th, I was woken at 6:30 by the phone ringing. It was a transplant coordinator calling about a deceased donor kidney. Was I interested? Of course! It was the first call I had received in nearly a year. Because more candidates are called than kidneys available, I asked how close to the top I was. The coordinator was vague, but said she thought I had a good chance at being #1 or 2, but I wouldn’t hear anything further until evening. So I spent the day in…Continue
Hello! As the new Atypical HUS Foundation Board moves into planning stages for next year and beyond, we would like your feedback on how we can better serve the aHUS population. Please visit this link to complete the survey. We will be collecting answers until August 1st. Please do not leave comments here as they will not be able to be included in the survey. Thank you for taking your time to complete this- our number one goal is to serve the aHUS community is the best possible…Continue
Added by Anne Bruns on July 7, 2015 at 7:37pm — No Comments
This weekend was full of communities coming together in great numbers, however our small but strong group of about 40 gathered taking another step in the defeat over aHUS. These individuals have done remarkably in their efforts to continue living their lives and improving the lives of others so that they all might gain independence from their aHUS diagnoses. Although there are adjustments to be made, aHUS is just that, a diagnoses, not the definition of who that person is or should be. We…Continue
Added by Crystal Ferreira on July 3, 2015 at 10:00pm — No Comments
Added by Jill Ziegler on July 1, 2015 at 1:24pm — No Comments