The Atypical HUS Foundation

aHUS Facts: Resources from the aHUS Alliance

     

The aHUS Alliance is an international federation of 14 nations dedicated to promoting aHUS advocacy around the world.  Recognizing that aHUS information is continually evolving regarding research, genetics, and orphan drug development, the aHUS Alliance offers aHUS Facts that are an accurate, updated and a dynamic resource.

Click HERE for an Overview of the 1st aHUS Awareness Day, Sept. 24 2015

The following resources are provided as an aHUS education and outreach initiative of the aHUS Alliance 

     The aHUS Fact Sheet is a single page (2-sided) document suitable for distribution at aHUS events, for the public to have easy access to basic facts about this disease, or as a resource that individuals or aHUS patient organizations might utilize for interviews or meetings.  It is a shortened version of the aHUS Facts and Key Information Sheet below.

 

aHUS Fact Sheet

Click below to Download the pdf

aHUS%20Fact%20Sheet.pdf

     The aHUS Facts and Key Information Sheet is what its name implies:  a full version that provides everything on the aHUS fact sheet and MORE - additional information, to include the source citations.  While this document contains information of importance to aHUS patient organizations, aHUS patients and families, and other stakeholders with interests in aHUS, its depth and detail make it best suited as an online resource.

aHUS Facts and Key Information

Click below to Download the pdf

aHUS%20Facts%20and%20Key%20Information.pdf

NOTE:   
     All 14 nations in the aHUS Alliance were offered multiple opportunities to give input and feedback throughout the process of creating these two documents.  Much of the core information was provided by aHUS Canada, with additional studies or articles added and with the inclusion of resources likely to be of interest to stakeholders within the aHUS community.  The final versions of these documents were reviewed by a subcommittee composed of aHUS Key Opinion Leaders from various countries, and have been approved for general release.

The 1st annual international aHUS Awareness Day

 Sept. 24, 2015

Press Release from the aHUS Alliance

(Global Federation of aHUS Patient Organizations)   

PRNewswire -  Click the title BELOW for the full press release, hosted image (to download)

August 12, 2015

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

Global aHUS Advocacy:  

aHUS Alliance

Information, Resources, and Activities

Facebook:  aHUS Alliance       Twitter:  @aHUSAlliance

#aHUSday  and   #aHUS24Sept  

Contact Usinfo@aHUSAlliance.org

www.ahusalliance.org

 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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