The Foundation for Children with Atypical HUS

Forum Discussions (67)

Featured Discussions
Linda Burke

Soliris

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website…

Started by Linda Burke in SolirisLatest Reply

Jodi Kayler

aHUS Business Cards and Flyer

Business CardsAttached is a template for aHUS Calling Cards (Business Cards) that can be used to help guide others to the Atypical HUS webs…

Started by Jodi Kayler in UncategorizedLatest Reply

Joy Lewis O'Brien

Current research & presentations: for patients and healthcare providers

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'Brien in UncategorizedLatest Reply

Discussions Replies Latest Activity
Michele Haymes

Anti Factor H Antibodies

Hi Everyone,  I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year.  In January we were…

Started by Michele Haymes in Uncategorized

2 36 minutes ago
Reply by Cheryl Biermann
Bill Biermann

Post Soliris and/or Post Transplant by the numbers

I know most of our "numbers"  are posted in various Forums, primarily under "Soliris",  so one of our goals will be centralizing the number…

Started by Bill Biermann in Soliris

10 Jan 31
Reply by Cheryl Biermann
Bill Biermann

Is there such a thing as "Atypical HUS Free" or "Remission periods"

Hello All,   The Foundation and the Scientific community are currently wrestling with the following topic:   DOES ATYPICAL HUS GO INTO REMI…

Started by Bill Biermann in Soliris

10 Jan 31
Reply by Cheryl Biermann
Linda Burke

Soliris

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website…

Started by Linda Burke in Soliris

279 Jan 30
Reply by Cheryl Biermann
Lisa Barker

UK aHUS Patients

At such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as mu…

Started by Lisa Barker in Soliris

33 Jan 27
Reply by Len Woodward
Lisa Barker

Seminar at House of Parliament Jan 17th

Hi i was wondering if anyone who was attending this had received their invite yet?

Started by Lisa Barker in Soliris

7 Jan 20
Reply by Cheryl Biermann
Cheryl Biermann

Taking the dread out of the hospital visits

Hi,   After speaking with one of our parents, I thought, well this would make a great forum for new parents!  Who else has suggestions in m…

Started by Cheryl Biermann in Soliris

1 Jan 18
Reply by debbie thelwell
Jessica Rios

Soliris side effects

Happy New Year everyone! I have a question about soliris...I'm wondering if anyone has seen a significant change in hair loss. My sister st…

Started by Jessica Rios in Soliris

3 Jan 5
Reply by Cheryl Biermann
Frank Reyniers

MUBODINA?

Found this...   http://www.prath.eu/project.htm   Is this something new or just a Eculizumab clone?   there is still hope!   Cheers, Frank  

Started by Frank Reyniers in Uncategorized

4 Dec 1, 2011
Reply by Cheryl Biermann
Joy Lewis O'Brien

Current research & presentations: for patients and healthcare providers

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'Brien in Uncategorized

50 Nov 7, 2011
Reply by Cheryl Biermann

RSS

WELCOME - Friends, Family Members, Patients, and Researchers - 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 "About aHUS" tab 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 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 end the tragedy and heartbreak 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 the Foundation for Children with atypical HUS atypicalHUS.50megs.com


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:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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