What the HHT?

A blog for the HHT community

Awareness

Lift Your Heart for HHT Celebration Kickoff!

Help our rare disease mascot flight! February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Lift Your Heart for HHT tribute celebration from February 22 through February 28 (Rare Disease Day®), for each donation made, we’ll honor your loved ones who are either affected by HHT…

Read More

Rare Disease Month

The month of February is all about feeling the love and here at Cure HHT we’re embracing all the love as we highlight our very special HHT Community during Rare Disease Month. February was officially declared Rare Disease Month in 2008 with February having the “rarest” number of days. Thirteen years later, we continue to be rare but stronger…

Read More

‘You got blood on your face, you big disgrace’

Currently, one of the most prized possessions our kids have is the Queen Greatest Hits CD. When Eleanor was a baby, we played Bohemian Rhapsody by Queen or the Muppets version for her every time she needed an echo or to have a test done at the hospital. The love of Queen passed to Theo and the CD is queued up in the car ready to go. Right now, We Will Rock You is…

Read More

HHT Awareness in a BIG Way!

HHT Billboard

This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard! Our “More Than Just a Nosebleed” billboard was perched on Route 50 in Maryland, the most traveled highway to all the Maryland beaches where approximately 30,000 cars passed this sign every single day. Can you imagine…

Read More

One Kiwis Dream for HHT Awareness

Tamara B & Shan

My first time learning about HHT was in 2016 when I was diagnosed with the disease at the young age of 43. I had suffered a fall from my horse that landed me at the Wellington Orthopedics Ward in New Zealand. During my admission, I was seen by a specialist, who had attended a seminar on a rare disease called HHT–just two days prior. He noticed I had ‘red spots’ on…

Read More