The Atypical HUS Foundation

2016 aHUS Family Conference - Register for the Nov. 4-6th Mtg

     The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference**, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel.  Registration is limited, FMI see details at the Eventbrite registration site:   http://ow.ly/4n2v06 .  Questions about aHUS Family Conference?   There is a direct way to “Contact the Organizer” and get your questions answered.   At the end of the Eventbrite event description is an envelope icon (just above the map).  Click “Contact” and send a message to The Atypical HUS Foundation.  An Events listing for The Atypical HUS Foundation’s aHUS Family Conference in Iowa is located at: http://atypicalhus.ning.com/events/ahus-family-conference-iowa

 

     From the University of Iowa website: (http://www.medicine.uiowa.edu/morl/events/)

“This collaborative effort will bring you the latest medical updates regarding atypical HUS (aHUS).  The aHUS clinicians and research teams at the University of Iowa will provide an entire day of aHUS medical and research information on Saturday, November 5th.  You will learn about the latest in aHUS diagnosis, treatment, transplantion and genetics, and the basics of "What is complement?" and How to manage chronic illness".

The weekend offers a unique opportunity for patients and families living with aHUS to meet one another and to discuss common issues.  The conference will conclude with a roundtable discussion where patients and families share stories and tips about living with aHUS.  Please contact Amy Weaver at amy-weaver@uiowa.edu with any questions about the conference.”

 

     Currently representatives from the aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, are forming plans to attend the Iowa conference and to additionally hold a global advocacy meeting.

**Portions of this event are made possible through a generous grant from Alexion Pharmaceuticals, Inc.

Looking for aHUS information closer to home?  

Global Genes offers regional aHUS Meetups across America, to include one physician presentation among other great features.  Check out their aHUS events at 

https://globalgenes.org/ahus/

Views: 90

Comment

You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

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.

************************

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service