No one can describe the aHUS journey better than atypical HUS patients and their caregivers, and who better to globally frame those challenging issues and needs than aHUS patient organizations? Adding the ‘patient voice’ to medical dialogue as an integral piece of health care is important for individuals, but providing insights on a broader stage can clarify patient concerns for researchers, industry, policy makers, and other stakeholders.
Patient advocates around the world are connecting, learning, and sharing across a rich variety of social media. A wide spectrum of content can be found across aHUS social media outlets, ranging from medical advances or research articles about aHUS to personalized content such a photos or posts that provide a glimpse into daily lives of patients. Tap into this ever-changing stream to discover what’s on the mind of aHUS patients, and learn what’s happening in terms of patient organization activities, with this quick view of aHUS social media.
Visit the aHUS Alliance on Facebook
Follow @aHUSallianceAct on Twitter for updates on global aHUS information, issues, and
events.
Join the conversation! RareConnect offers a global aHUS webpage for to connect information and advocacy among patients, aHUS organizations, and other stakeholders – available in 6 languages (EN, ES, FR, IT, PT, DE)
aHUS Awareness Day is 24 September. Follow activities and campaign updates on Twitter
@aHUS24Sept
Here are some common hashtags used by the aHUS community on Twitter:
(General use for all nations, all year)
#aHUSalliance #aHUSaction #aHUSaware #renal #AKI
#aHUSissues #aHUSresearch #aHUSdiagnosis #kidney #TMA
#aHUSfamilies #aHUSpatients #aHUSfacts #dialysis
#aHUSpolicy #aHUSgenetics #orphandrug #transplant
#aHUSkids #saveaHUSlives #aHUStreatment #RareDisease
Add @aHUSallianceAct to Tweets so your outreach effort reaches multiple nations and broadens your message.
(Specific to aHUS Awareness Day)
#aHUSday #aHUS24Sept
Some themes in advocacy
Call to action:
#saveshuslives, #PatientVoice, #aHUSvoice, #aHUSadvocacy, #aHUSinsights
Key Issues:
#diagnosis, #aHUStreatment, #genetics, #orphandrugs, #aHUSregistries, #aHUSresearch, #aHUSinfo,
#aHUSfacts, #aHUSresearch, #complementinhibitors
Note: Thanks to the researchers, rare organization, and many aHUS world advocates who have contributed ideas and hashtags.
Look for aHUS content in multiple languages:
#aHUS #SEU #SHUa
#RareDisease #maladie rare (FR) #malattia rara (IT) # enfermedad rara (SP)
If you’re looking to spread aHUS awareness or to begin an aHUS patient organization in your country to create an advocacy project, creating a Twitter account is an excellent way to start a visible online presence. From the 2012 ICMA website article ‘Social Media and Citizen Engagement’, “Gone are the days when you could tally Facebook “likes” and Twitter “followers” as measures of social media success. Today, it’s not just about who you know, but what you are saying to them and whether or not they are sharing it with others.” (http://ow.ly/92dW300rSxK) Connect with our aHUS Alliance team to learn more. E: info@aHUSallianceaction.org
