The Atypical HUS Foundation

Sept 24 Marks the first aHUS Awareness Day!

 Join In - 1st  annual aHUS Awareness Day, set for Sept 24, 2015!

     The aHUS Alliance is an international federation of 14 nations dedicated to promoting aHUS advocacy around the world.  On 24 September 2015, help us raise visibility for patient needs and issues by joining in to post, blog, and Tweet about the aHUS community.

     Between now and aHUS Awareness Day, you’ll see commentary across social media and on aHUS patient organization websites.  Help inform the world about what it’s like to be diagnosed with the rare disease atypical HUS, what challenges you face in life, and the impact of aHUS on families, relationships, and school or work.   Raise your voice, raise awareness!

 

The Importance of aHUS Awareness Day,  Sept 24

A Press Release from the aHUS Alliance  (International group of aHUS Patient Organizations)   

PRNewswire August 12, 2015  Click the title BELOW for the full press release, hosted image (to download)

aHUS Awareness Day is 24 September, Raising Visibility

for Rare Disease Patients with Atypical HUS

                                                            Follow global aHUS Awareness Day info and activities:        

Facebook:  aHUS Alliance                 Twitter:  @aHUSAlliance    #aHUSday  and   #aHUS24Sept  

Connect with the aHUS Alliance:  info@aHUSAlliance.org

 

 

Twitter- 10 Day Countdown to aHUS Awareness Day

(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 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 2.  Highlight 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

 

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 and to Anne Bruns of The Atypical HUS Foundation for #aHUSaware.  Please add @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, and send in your photo with text before 9/12

to create your personalized Air Mail Envelope graphic

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

 

University of Iowa – a Longitudinal Study

Innovative Biomarker Research into aHUS, MORL

 

 

 

 

 

 

 

 

 

 

Views: 138

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Comment by Len Woodward on September 2, 2015 at 2:30am

Excellent plans needing excellent deployment by all.

Comment by Dana M Simone on September 1, 2015 at 6:49pm
Amazing how much has already come together for the big day! You are an effective project leader, Linda! Thank you:).

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