An HHT Diagnosis – What Does This Mean to Me and My Family?

Highlights of the recommended screening and treatment guidelines that should follow an HHT diagnosis; topics will also include the need for precautionary measures, like prophylactic antibiotics and IV filters, as well as links between HHT and other medical conditions.

Presented by: Dr. Justin McWilliams, UCLA HHT Center of Excellence

A World of HHT Awareness

world_mapGet on the Interactive Map!

Cure HHT is taking it up a notch for HHT Awareness Month and setting some serious goals! We have created the "Make the Invisible Visible" campaign in conjunction with HHT Awareness Month to double the HHT diagnosis rate. Only 10% of people with HHT have been diagnosed, even though one in every 5,000 people has the genetic disease.

It's time to #SeeHHT and make the #InvisibleVisible.

 

So, how can you help Cure HHT drive up the diagnosis rate? You can create a World of HHT Awareness.

Each Monday, we will post a Cure HHT Challenge on Twitter and Facebook. You have a full week to complete each challenge and post or send some type of photographic proof with your location to us at [email protected] Cure HHT will then update a map each week to show the progress of HHT awareness around the world.

Let's create a World of HHT Awareness together!

Challenge One:  Purchase a pair of the exclusive Cure HHT Jamberry Nail designs before June 10. Once applied, show your nails off to at least five people during HHT Awareness Month. And don’t forget to send us a picture so we can add you to our interactive awareness map! Pictures of buying your design or showing them off is accepted.
Get started: https://curehht.org/get-involved/fundraising/hht-fundraising/ 

Challenge Two: Make and submit a video that highlights HHT topics, stories or events. We’re open to personal videos filmed using a phone or computer as well as more complex video pieces from those multimedia experts out there. Check out this super simple way to get your HHT experience out there: https://curehht.org/get-involved/submit-your-video-story/

Challenge Three: We have more than 300 supporting votes for the HHT DATA Act, but we need to continue the fight. Call your house and senate representatives and encourage them to co-sponsor the bill. Here is everything you need to get started: http://bit.ly/1IZLtgo.

Challenge Four: Print out these HHT information cards and give them to people throughout the day. Try handing one out every time you give someone your business card or leave them on the restaurant table with your bill.

 

View A World of HHT Awareness in a full screen map