The Atypical HUS Foundation

January 2015 Blog Posts (7)

aHUSUK - Advocacy Efforts yield Increased Access to Soliris in the UK

Great News from aHUSUK, with a message from aHUS researcher Dr. Tim Goodship that reads in part:

“…. I am delighted that aHUS patients in England will now be able to receive eculizumab when they need it for as long as they need it. This I hope will be a source of great reassurance to them, their families and carers. aHUSUK can take great pride in…

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Added by Linda Burke on January 28, 2015 at 11:05am — No Comments

NEW Videos- 2014 aHUS Family Conference Presentations

They're…

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Added by Linda Burke on January 26, 2015 at 9:30pm — 1 Comment

Our Friends in Ontario, Canada Need Our Help!

Our aHUS friends in Ontario Canada need our help.  Their Health Minister Dr. Eric Hoskins has yet to provide access to Soliris for aHUS patients.  Dr. Hoskins responded to a post I made on his Facebook page by saying he is looking for evidence that Soliris works for aHUS like it does for PNH.  Please help our Canadian friends by sending Dr. Hoskins an email telling him how Soliris has worked for you or your loved one.  If we get enough support we can truly make a difference.  Below is what…

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Added by Jeff Schmidt on January 20, 2015 at 7:10pm — 4 Comments

aHUS Across America: Your State’s Video Clip Entry

Hello Everyone! My name is Alyssa Deffenbaugh and I am hoping to put together an video for Rare Disease day with all of us aHUS patients.  I am basing my idea on a video that Jimmy Fallon (NBC televsion:  Late Night with Jimmy Fallon) put together during the Superbowl last year – the campaign was called ‘Subs Across America’ and featured Subway Footlong sandwiches.  If sandwich lovers can grab the spotlight, why not not ask the aHUS community to raise Rare Disease Day awareness with…
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Added by Alyssa Deffenbaugh on January 15, 2015 at 2:56pm — 8 Comments

Some Good News in January for Our Global Friends

January can be a tough month here in the US as it’s cold and dark.  But this is a big month for some of our friends across the globe.  While we in the US are fortunate to have access to Soliris there are countries that either don’t have access or they have restrictions.  That’s about to change for some of our friends.



UK:

This month in the UK, NICE (National Institute for Health and Care Excellence) is expected to finalize the guidance on the use of…

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Added by Jeff Schmidt on January 10, 2015 at 3:06pm — No Comments

Rare Disease Day 2015 - Our Turn to Help

Raise your hand if you're rare. If you know someone that is rare. I see your hand and I see a desire to help, to get out and spread the word. Rare Disease Day is just around the corner- February 28 and this year has a greater number of events and opportunities than ever before. Rare is changing every day and growing stronger. Our voices are being heard, the sweet faces of rare patients are being recognized and the overall awareness is growing momentum each day. It is our time, your time to…

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Added by Anne Bruns on January 9, 2015 at 12:37pm — No Comments

Rare Disease Day is Saturday, FEBRUARY 28th

 

World Rare Disease Day, recognized annually on the last day of February, encourages patients and their families, medical professionals, researchers, government officials, and companies developing treatments for rare diseases to join together to focus attention on rare diseases as a public health issue.  

You can raise…

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Added by Linda Burke on January 9, 2015 at 8:30am — No Comments

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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 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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