June is HHT Awareness Month
For individuals and families affected by Hereditary Hemorrhagic Telangiectasia (HHT), awareness and support are vital. June is our opportunity to come together, share our experiences, and educate others about this often-underdiagnosed condition. Explore resources, connect with the community, and find out how you can help amplify the voices of those living with HHT.
About HHT Awareness Month
When an ambitious group of families and physicians came together to establish Cure HHT in 1991, the goal was simple: create change. Change how readily this disease is recognized, change the support and resources available to individuals impacted by HHT, and change access to truly expert care.
More than 30 years later, we’re still fighting for change and awareness – though we are closer than ever to breakthrough treatments and potential cures.
With the average delay in receiving an HHT diagnosis being 27 years, we ask our community to help us raise awareness throughout the month of June to continue our original mission. People can get involved by sharing social media posts, telling their story, making a purchase at our online store, or giving directly to our campaign.
Our Campaign: Beyond the Visible
Living with and caring for someone with an HHT diagnosis can be challenging. Individuals aren't just dealing with a random nosebleed, they are stressing about hidden AVMs and planning work shifts around infusion dates. Families have to travel out of state, not for vacations at theme parks, but for skilled care. There is no surgery to cut out HHT inheritable genes or a cure-all treatment. An estimated 80% of people living with HHT are currently undiagnosed.
This year's theme, Beyond the Visible, focuses on these often unseen factors that play a critical role in the lives of patients and their families. We are asking everyone: If you could #SeeBeyond, what would you see?
Michael is a retired contractor who loves fishing, good food, and music. He loves showing off pictures of his grandchildren and wants to take a cruise somewhere warm.
Michael lives with HHT.