The Foundation for Children with Atypical HUS

Sept 20-21st, NORD hosts ORLANDO aHUS Meeting

Event Details

Sept 20-21st, NORD hosts ORLANDO aHUS Meeting

Time: September 20, 2013 at 7pm to September 21, 2013 at 3pm
Location: Renaissance Sea World
City/Town: ORLANDO Florida
Event Type: ahus, regional, meeting
Organized By: NORD
Latest Activity: Sep 10, 2013

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Event Description

     NORD's 3rd aHUS Regional Meeting will be held on Sept. 20-21st at the Renaissance Sea World in Orlando, Florida.  There will be an September 20th dinner (7 to 9 pm) for attendees that Friday evening with an opportunity to connect with other aHUS patients and their families. 

     The highlight of the full day Saturday Sept. 21st meeting (8:30 to 3 pm) will be an extended presentation and question time with Dr. Robert B. Kaplan, MD, a physician experienced in aHUS diagnosis, treatment, and genetics.  Dr Kaplan is a key faculty member within the Division of Hematology and Cellular Therapy of The Western Pennsylvania-Allegheny Health System and the Director of the Hemostasis-Thrombosis Laboratory at the Western Pennsylvania Hospital in Pittsburg PA.

 The Foundation for Children with Atypical HUS was honored to include Dr. Kaplan's "Dispelling Common Myths in aHUS" as a cornerstone of our website tab 'ADULTS with aHUS'.  

SEE THE FULL PROGRAM HERE, click the pdf file to open NORD's Orlando Program - aHUS.pdf

 

     Melissa Hearn will present on behalf of the Foundation for Children with Atypical HUS,  PLAN to ATTEND, and contact Allie Freitas at NORD to register for this free event for aHUS patients, families, and caregivers.  A travel stipend may be available to defray your expenses - call Allie at NORD for details! 

 

Alexandra W. Freitas
afreitas@rarediseases.org

Office: 203.744.0100 ext. 226
 
National Organization for Rare Disorders, Inc.
55 Kenosia Avenue
Danbury, CT 06810
Cell: 203.501.3690
Office: 203.744.0100 ext. 226
Fax: 203.798.7413

www.rarediseases.org
 
SEE THE FULL PROGRAM HERE, click the pdf file to open NORD's Orlando Program - aHUS.pdf
 
 

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Join The Foundation for Children with Atypical HUS

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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 patients, family, friends, caregivers 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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