The Atypical HUS Foundation

24 September 2016 is international aHUS Awareness Day.

24 September 2016 is international aHUS Awareness Day.

     This week the aHUS Alliance has announced the theme for the 2016 aHUS Awareness Day as 'Rising above aHUS', with an advocacy campaign symbol of a red balloon to unite messages worldwide.  There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as:  the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS.

     The 2016 aHUS Awareness Day campaign will feature new data from the aHUS global poll, results of which will be presented in a 21 June webinar at 11 am (EST), hosted by RareConnect and  featuring analysis and poll commentary by Dr. Christoph Licht of Toronto’s Hospital for Sick Children.

Link & Info to register for the 21 June RareConnect webinar:   http://ow.ly/lCc4300kjyA

FMI on the aHUS Global Poll:   http://ow.ly/CJms300KQXt

     What is your interpretation of the 2016 campaign theme ‘Rising above aHUS’?  Between now and aHUS Awareness Day, patients and caregivers can inform the world about what it’s like to be diagnosed with the rare disease atypical HUS, what challenges are faced in life, and the impact of aHUS on families, relationships, and school or work.  An array of 2016 campaign resources will be available for use by individuals, groups, and organizations to utilize and include in their outreach and awareness efforts.

     The aHUS Alliance encourages every nation, all individuals affected by aHUS, and corporate or medical teams to create an aHUS  Awareness Day event, plan, or project  for the 2016 September 24 campaign ‘Rising above aHUS’.  Raise your voice, raise awareness!

 

 

FMI about the aHUS Alliance, visit www.aHUSallianceaction.org. On Twitter, follow @aHUSallianceAct

On Twitter, follow aHUS Awareness Day info & updates at @aHUS24Sept 

Views: 77

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