The Foundation for Children with Atypical HUS

Oct. 24-26th, 2014 - aHUS Conference at the U of Iowa

Event Details

Oct. 24-26th, 2014 -  aHUS Conference at the U of Iowa

Time: October 24, 2014 at 4:30pm to October 26, 2014 at 10:30am
Location: University of Iowa, Carver Medical School
Website or Map: http://www.medicine.uiowa.edu…
Event Type: ahus, family, conference
Organized By: U of Iowa Physicians/Researchers, MORL staff, The Talbots, The Biermanns, Linda Burke
Latest Activity: on Monday

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Event Description

The University of Iowa and the Foundation for Children with Atypical HUS announce the 2014 aHUS Family Conference to be held at the University of Iowa on October 24-26, 2014.

JOIN US for the only aHUS conference in the United States to offer multiple medical presentations from 6 aHUS experts and covering high-interest  topics such as mutations, disease pathology, the complement cascade, transplant issues and MORE! 

Click here to REGISTER for the Iowa aHUS Family Medical Conference   Iowa’s registration deadline is August 29th.   Questions?   Email:  Amy-Weaver@uiowa.edu

The Foundation for Children with Atypical HUS is pleased to support your attendance by providing:  FREE hotel lodging* for both Friday & Saturday night, a $100. travel stipend per family, and MORE.   Click here to reserve your  room for Oct. 24 and 25th at the Sheraton Iowa City Hotel.

 

Schedule of Events

*Friday, October 24th -  4 to 6 pm    Meet & Greet     FREE

NORD hosts a Meet & Greet for patients, offering patients and caregivers the opportunity to connect with one another and NORD. 

*Friday, October 24th -  6 pm    Welcome Dinner     FREE

Your hosts - the Foundation for Children with Atypical HUS.

*Saturday, October 25th  - 8am to 4pm  Family Medical Conference     FREE

Links to the full agenda and to conference registration are at http://www.medicine.uiowa.edu/morl/events/

MORL tours and genetic screening will be available onsite. FMI please contact Amy Weaver at amy-weaver@uiowa.edu .

 

While this conference is geared toward adults, we understand that some families wish/need to bring children.  Activities will be offered in separate room staffed by ChildLife specialists. 

 *Saturday, October 25th - 6pm       Family/Patient/Caregiver Dinner     FREE

Your hosts - The Foundation for Children with Atypical HUS.

*Sunday, October 25th -  7:30am to 10:30am   Wrap-Up Breakfast       FREE

 Join other aHUS patients, caregivers, and family members at the Breakfast Wrap-Up Meeting hosted by Global GenesReserve your free Sunday Buffet breakfast spot at http://globalgenes.org/ahus-registration/

Click for MORE info

 

 

 

 

Comment Wall

Comment

RSVP for Oct. 24-26th, 2014 - aHUS Conference at the U of Iowa to add comments!

Join The Foundation for Children with Atypical HUS

Comment by Linda Burke on March 5, 2014 at 1:35pm

Hi Joshua,

The University of Iowa is planning the conference, so as soon as they release an agenda it will be posted here.  Phyllis Talbot will be creating info on events surrounding the Oct. 25th medical conference, and she'll provide details as soon as they are arranged, too.

Comment by Joshua Willis on March 5, 2014 at 10:20am
Could u email me more information on this event. We are very new to this disease and everything it brings so definitely want to go to the event to better understand all the ins and outs.

Attending (23)

Might attend (1)

IN REGARD TO MEMBERSHIP REQUESTS

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

The Foundation for Children for Children with Atypical HUS 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 Linda@atypicalhus.org

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

WELCOME - JOIN US!

The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


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

Foundation for Children with Atypical HUS
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 Linda@atypicalhus.org


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