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 35 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: Visible Together
This June, Cure HHT is proud to recognize HHT Awareness Month with a campaign centered on one powerful idea: If we stand together, HHT’s visibility cannot be ignored.
HHT is often called a rare disease, but it does not feel rare to the people and families living it everyday. Too many individuals remain undiagnosed. Too many families still face delays in answers, care, and support. Too many lives have been lost before having answers or effective treatments. HHT Awareness Month is a time to change that.
Visible Together is a call for collective visibility. It is a reminder that progress happens when the entire community – patients, caregivers, clinicians, researchers, donors, and advocates – work together to make HHT harder to miss and impossible to ignore.
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.