The Atypical HUS Foundation

aHUS in the News

aHUS in the News

Press Releases from aHUS Patient Organizations

Source: The aHUS Alliance(Global Federation of aHUS Patient Organizations)   

Press Release Issued:  August 12, 2015

Announced:  1st international aHUS Awareness Day:  Sept 24, 2015

aHUS Awareness Day is 24 September, Raising Visibility for Rare Disease Patients with Atypical HUS

 

Source:  The Foundation for Children with Atypical HUS (now known as The Atypical HUS Foundation)

Press Release Issued:  September 23, 2011

Foundation for Children with Atypical HUS Recognizes First Treatment Approved for Extremely Rare Disease

 

Press Release, other:

Source:  Alexion Pharmaceuticals

June 17, 2012, Alexion Pharmaceuticals

"New Data Show Majority of Patients with aHUS Experienced Systemic Multi-Organ Complications Prior to Treatment"

 

Magazine Articles

Forbes Magazine

Matthew Herper is a vocal critic of drug pricing who labeled Alexion’s Soliris the 'World’s Most Expensive' drug in an earlier Forbes' Feb. 2010 article.  In this Sept. 24, 2012 article, this same author examines the impact of severe ultra-rare diseases, the hope brought by effective treatments, and the economics of innovation. Describing Alexion’s 20-year journey under CEO Dr. Leonard Bell's leadership, Herper's article details an insightful backstory and explainshow Alexion is working to help patients and families with other severe disorders.  

 

http://www.forbes.com/sites/matthewherper/2012/09/05/how-a-440000-drug-is-turning-alexion-into-biotechs-new-innovation-powerhouse/

 

Print Articles about aHUS Patients and Families

Burke family, May 11, 2012 -  Bangor Daily News, Health Supplement (New drug benefits Maine boy suffering from rare disease) http://bangordailynews.com/2012/05/11/special-sections/new-drug-benefits-maine-boy-suffering-from-rare-disease/

 

Bill and Cheryl Biermann, Feb 29, 2012 - Yahoo! Health, Rare Disease Day Story (Nathan's Journey with aHUS) http://health.yahoo.net/experts/dayinhealth/rare-disease-day-30-million-americans-affected

 

Phyllis Talbot, Feb. 29, 2012 - ABC News.com, Rare Disease Day Story (Networking with Others Brings Shared Information and Support) 

http://abcnews.go.com/Health/rare-day-highlights-ways-cope-rare-diseases/story?id=15818755#.T07QE3lSSjY

 

 

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