The Atypical HUS Foundation

aHUS Awareness Day - Sept. 24th

The aHUS  Awareness Day campaign is marked annually each 24 September.  Organized by the aHUS Alliance, a collaborative group of patient organizations in various countries, information and resources are available at www.ahusallianceaction.org .

Contact the aHUS Alliance:  info@aHUSallianceaction.org

Follow the 24 September campaign on Twitter @aHUS24Sept

 1st annual international aHUS Awareness Day

 Sept. 24, 2015

The aHUS Alliance is a group of 14 countries dedicated to providing aHUS information, resources, and advocacy initiatives in a connected global network.

Press Release from the aHUS Alliance

(Global Federation of aHUS Patient Organizations)   

PRNewswire -  Click the title BELOW for the full press release, hosted image (to download)

August 12, 2015

aHUS Awareness Day is 24 September, Raising Visibility for Rare Disease Patients with Atypical HUS

 The aHUS Fact Sheet is a single page (2-sided) document suitable for distribution at aHUS events, for the public to have easy access to basic facts about this disease, or as a resource that individuals or aHUS patient organizations might utilize for interviews or meetings.  It is a shortened version of the aHUS Facts and Key Information Sheet below.

 

aHUS Fact Sheet

Click below to Download the pdf

aHUS%20Fact%20Sheet.pdf

     The aHUS Facts and Key Information Sheet is what its name implies:  a full version that provides everything on the aHUS fact sheet and MORE - additional information, to include the source citations.  While this document contains information of importance to aHUS patient organizations, aHUS patients and families, and other stakeholders with interests in aHUS, its depth and detail make it best suited as an online resource.

aHUS Facts and Key Information

Click below to Download the pdf

aHUS%20Facts%20and%20Key%20Information.pdf

Click Here to Learn More

 about the aHUS Alliance Fact Sheets

Follow global aHUS Awareness Day info and activities:

Facebook:  aHUS Alliance       Twitter:  @aHUSAlliance

#aHUSday  and   #aHUS24Sept  

Contact Usinfo@aHUSAlliance.org

 The Following is Information about the

1st aHUS Awareness Day Campaign 2015

Twitter- 10 Day Countdown to aHUS Awareness Day, 2015

(Begins Sept 15, ends on Sept 24th)

EVERYONE is invited to participate, on Twitter or across social media!  To amplify messaging, here’s a suggested framework:

Day 1 (Sept 15)   Announcing aHUS Awareness Day.  (Add your social media message about aHUS awareness)         #aHUSday   and #aHUS24Sept    @aHUSAlliance

Day 2 (Sept 16)   Raise visibility for your nation’s aHUS patient organization.  Highlight your country's aHUS issues, such as access to treatment options or concerns/projects/aHUS developments.  Great opportunity for others in the aHUS arena (rare or renal groups, universities, research teams, etc.   #aHUS(country name)     #aHUSissues    other (see Hashtag list below)

Day 3 (Sept 17)  Focus: Needs and issues for aHUS families and patients   #aHUSpatients   #aHUSfamilies

Day 4 (Sept 18) Focus: aHUS Advocacy, promote common concerns around the world or in your nation.  #aHUSadvocacy or   #aHUSalliance

Day 5 (Sept 19)  Focus:  aHUS research or genetics    #aHUSresearch  or #aHUSgenetics

Day 6 (Sept 20)  Focus:  Same as Day 2Highlight another meaningful awareness area.

Day 7 (Sept 21)  Focus: aHUS Diagnosis (speed, accuracy, aHUS facts)   #aHUSdiagnosis, aHUSfacts

Day 8 (Sept 22)  Focus: aHUS  issues specific to children or adults   #aHUSkids,   #aHUSadults (Adults in the workplace- time lost to illness/treatment, caregiver issues, sibling concerns, aHUS kids at school, etc.) 

Day 9 (Sept 23)  Focus:  Same as Day 2.  Highlight another meaningful awareness area.

Day 10 (Sept 24)   It’s Here!  Why is aHUS Awareness Day important to you?

 

(Sample Hashtags, Suggestions)

#aHUSalliance                                       #aHUSaction                                          #aHUSaware

#aHUSissues                                         #aHUSresearch                                      #aHUSdiagnosis

#aHUSfamilies                                       #aHUSpatients                                        #aHUSfacts     

#aHUSpolicy                                          #aHUSgenetics                                      #aHUSorphandrug 

#aHUSkids                                             #saveaHUSlives                                     #aHUStreatment  

#complementinhibitor

 

 

Special Thanks:  The 10 Day Twitter Countdown was suggested by Dana Simone of The Atypical HUS Foundation in America.  Thanks also to Kerri Grey of aPSGA, Australian for #saveaHUSlives, Len Woodward of aHUSUK for #complement inhibitor and to Anne Bruns of The Atypical HUS Foundation for #aHUSaware.  Please add #aHUSAlliance and @aHUSAlliance to your outreach efforts - thank you!

 

 

aHUS Fact Sheet

and aHUS Sept. 24 Graphic Available with Text in Multiple Languages

Contact the aHUS Alliance:  info@aHUSAlliance.org

 

 

aHUS Awareness Day – USA Projects: The Atypical HUS Foundation

 

aHUS Messages to the World 

Video project, created by The Atypical HUS Foundation

Project Leads:  Jeff Schmidt and Alyssa Deffenbaugh  

Read Jeff Schmidt’s blog, about the video project: Patients' Voices:  Communicating issues and insights with Air Mail Envelope Messages

Click Here to WATCH THE VIDEO

aHUS Kids Project - Artwork:  the aHUS Experience in America

Creative Expressions Project

Project Leads:  Jeff Schmidt and Alyssa Deffenbaugh 

Read the blog for participation details

 

aHUS Alliance Fact Sheet

A USA Project to Spread Awareness about aHUS

Project Lead:  Jeff Schmidt

Read Jeff's blog FMI

 

University of Iowa – a Longitudinal Study

Innovative Biomarker Research into aHUS, MORL

 

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

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