The Atypical HUS Foundation

July 2015 Blog Posts (10)

aHUS Baltimore meet-up

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…

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Added by Alyssa Deffenbaugh on July 28, 2015 at 12:16pm — No Comments

Ra Pharmaceutical’s C5 Complement Inhibitor: RA101495

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…

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Added by Linda Burke on July 26, 2015 at 4:00pm — No Comments

Some news from France

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.

We…

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Added by Nicolas on July 26, 2015 at 5:34am — 2 Comments

Breaking NEWS – OMS721 just granted ‘Fast Track’ approval by the FDA

     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…

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Added by Linda Burke on July 23, 2015 at 4:30pm — No Comments

aHUS Global Genes Meetup Boston

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.…

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Added by Dana M Simone on July 19, 2015 at 5:43pm — 1 Comment

LONDON Mtg. NEWS - 4 Complement Inhibitors Possible in the aHUS Pipeline (Aug: updated to 5!)

  

     

Atypical HUS Drug Pipeline – 2017 Update from the aHUS Alliance

Click above to view updated information regarding Therapeutics now in development

Original Article…

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Added by Linda Burke on July 12, 2015 at 5:00pm — 1 Comment

Transplant Time!

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…

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Added by Grace on July 10, 2015 at 4:18pm — 6 Comments

Atypical HUS Foundation Survey

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…

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Added by Anne Bruns on July 7, 2015 at 7:37pm — No Comments

San Francisco meetup hosted by Global Genes

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…

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Added by Crystal Ferreira on July 3, 2015 at 10:00pm — No Comments

NORD patient meeting in Teaneck, New Jersey

Another successful patient meeting in the Ahus foundation books!! This meeting held by NORD and led by Allie Freitas was another amazing weekend of patient advocacy, support and education. I continue to be amazed by my fellow Ahus patients and their caregivers. When I think of the families I met at this meeting and every meeting I've attended for that matter, resilency is the word that pops in my head. The stories of struggle and courage that my brothers and sisters in the Ahus world share,… Continue

Added by Jill Ziegler on July 1, 2015 at 1:24pm — No Comments

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