Help make the issues and needs of the aHUS community visible - join others from around the world to send messages that provide insight into the challenges faced by atypical HUS patients.
You alone can best describe the impact of aHUS on your life and your relationships. Who better to explain the many challenges of dealing with aHUS treatment while working, being a parent, or struggling with financial and emotional issue? Since aHUS is a complex and rare disease, there are many subgroups who have differing issues:
*young mothers whose aHUS was triggered by pregnancy,
*families who juggle home issues with aHUS pediatric patients,
*dialysis patients who spend countless hours in treatment,
*and transplant or ESRD patients at various stages of the process - just to name a few.
While we can presume to understand the myriad stuggles of each group, we need to hear your voice. Authentic patient viewpoints, varied and rich with experience, are essential to developing better educational materials and patient services.
Lend your voice with an outpouring of social media between now and September 24th, post comments regarding aHUSon your Facebook page, and ask others to share. Add photos, use Twitter or Instagram or other outlets - communicating the 'aHUS experience' with the personal touch and insights that only you can explain to the world.
Here are some tools and resources to let you reach out to the world, and Be an aHUS Advocate!
The 1st international aHUS Awareness Day will be marked on September 24, 2015 as an outreach and education initiative of the aHUS Alliance, a collaborative group of 14 nations. From the aHUS Alliance's press release on August 12, 2015:
The theme for aHUS Awareness Day is 'Communication'. 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. Noted Linda Burke, an American representative with the aHUS Alliance, "Issues facing rare disease patients affect not only the individual with the disease, but also include the social, financial and societal impact among family members, the workplace, the healthcare system, and many other areas."
At the core of patient treatment, caregiver concerns, medical team coordination, and disease research is communication of information and issues. Len Woodward, a UK representative of the aHUS Alliance remarked, "Our goal for international aHUS Awareness Day was to provide families affected by aHUS and patient organizations to have an opportunity to join together and to shine a spotlight on aHUS around the world. We encourage medical and research teams, pharma, healthcare professionals, geneticists and policy makers to communicate their own message about aHUS issues and their team's commitment to improved patient outcomes."
Track trends on social media, and follow aHUS Awareness Day info and activities:
To DOWNLOAD the aHUS Awareness Day graphic (jpeg photo, as above, from the press release) and to view the full PRNewswire:
EVERYONE is invited to participate, in this 10 Day Countdown to aHUS Awareness Day, 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 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, 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 Alliance - global aHUS Awareness Day info and activities:
#aHUSday and #aHUS24Sept
aHUS Awareness Day in America, The Atypical HUS Foundation: Click Link FMI
Follow The Atypical HUS Foundation:
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
aHUS Kids Project - Artwork: the aHUS Experience in America
Creative Expressions Project
Project Leads: Jeff Schmidt and Alyssa Deffenbaugh
aHUS Alliance Fact Sheet
A USA Project to Spread Awareness about aHUS
Project Lead: Jeff Schmidt
University of Iowa – a Longitudinal Study
In Proud Support of:
VISIT the aHUS-Specific webpage at RareConnect
a global Rare Disease Initiative of EURORDIS and NORD
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