What the HHT?

A Voice for the HHT Community

Social Media – The Awareness Weapon of Choice

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By Lauren Linhard – [email protected]


I had a particularly stressful hour yesterday as I dived into the Rare Disease Twitter Chat with Dr. Richard Besser and ABC News. Hunched over at my desk, arms tensed over the keyboard, I had a single goal – get HHT out there.

By the end of the chat, Cure HHT had been retweeted by Dr. Besser twice, effectively reaching his more than 9,000 followers; gained 12 new followers comprised of doctors and fellow health organizations; and had 140 people check out our Twitter profile. 

That, my friends, is the power of social media! In just one day, a confirmed 6,029 people interacted in some way with Cure HHT on Twitter.

And the best part? You can do this too! Don’t be afraid to rock the #CureHHT or tag @CureHHT in your Tweets. Try a few of these: #CureHHT Do your family members have unexplained nosebleeds? Learn about genetic testing for HHT. #CureHHT 1 in 5000 Americans have HHT, a genetic disorder that can lead to tragedy if untreated. #CureHHT It can take up to 30 years to be diagnosed with HHT.

Twitter not your thing? That’s cool – Facebook is the most commonly used social media tool out there. Change your profile pic to the Cure HHT logo for a week and invite friends to ask questions about the disease. Share posts from Cure HHT at least once a week, and encourage friends to share it for you as well. Create a Facebook event to host an online awareness day where everyone contributes photos.

If you don’t speak up for HHT, no one will hear about HHT. So tie on that social media superhero cape (I know you have one) and hit the keyboard for HHT.

>Click to see a summarized version of the Rare Disease Tweet Chat

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