Skip to content

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.

What Can You Do To Get Involved?

Every year on June 23 — and throughout the month of June — local, state, federal, and national organizations come together to shed light on the impact of HHT and to show support for those at living with and caring for those with HHT.

This year’s theme, “Beyond the Visible,” focuses on shining a light on those living with the unseen challenges that come with HHT. As we observe the our annual awareness campaign, this theme reminds us of how far we’ve come and the work still ahead to diagnose, treat, and improve the quality of life for HHT patients. By working together, we can create a better future.

Children - Back to School

Raise Awareness

Jessica Hammer - Finish Line

Host a Fundraiser

FUNDRAISER BALL FOR GRACE NOLAN ARTICLE

Donate

Upcoming Events

Webinar: Mental Health & HHT

Mental Health & HHT Tues., May 24th  |  12:00 p.m. (ET) Living with Hereditary Hemorrhagic Telangiectasia (HHT) presents unique physical challenges, and this webinar will address the often-overlooked impact on mental well-being. Join us for a supportive discussion exploring the emotional aspects of managing a chronic condition like HHT. Our expert speaker Abbey J. Hughes,…

Read More

Facebook Live: Ask Me Anything with Miles B. Conrad MD, MPH

Ask Me Anything Wed., May 21th  |  7:00 p.m. (ET) This is your opportunity to ask questions about HHT symptoms, diagnosis, treatment options, and managing life with this condition. Whether you’re a patient, family member, or caregiver, this interactive session will offer a supportive space to get the information you need. We look forward to…

Read More


Kate is a teacher, an avid swimmer, and addicted to green tea lattes. She loves traveling, dogs, and dreams of having a family.

Kate lives with HHT.

Stand with Us on HHT Awareness Day

Day
Hour
Minute
Second

Thank You To Our Sponsors

About Diagonal Therapeutics

Diagonal Therapeutics is a biotech company pioneering a new approach to discovering and developing agonist antibodies. The Company’s DIAGONAL platform combines proprietary computational and experimental techniques to overcome historical challenges associated with agonist antibody drug discovery. Diagonal’s emerging pipeline – discovered using the DIAGONAL platform – has the potential to deliver life-changing therapies to patients by tackling the underlying cause of disease.

About Vaderis

Vaderis is a clinical stage biotech company developing treatments for rare and orphan diseases associated with vascular malformations. There is a significant number of debilitating and largely untreated rare diseases, such as HHT (Hereditary Haemorrhagic Telangiectasia), in which patients have overactivation of AKT triggered by upstream genetic mutations resulting in vascular overgrowth. Vaderis is developing VAD044, a daily, oral allosteric AKT inhibitor, which has been investigated in a clinical proof of concept study in HHT patients and is currently in a 12 month Open Label Extension. There are no drugs approved to treat HHT and Vaderis aims to be the first company to develop a medicine for the treatment of HHT and other diseases associated with vascular malformations.

About Alnylam Pharmaceuticals

Alnylam Pharmaceuticals (Nasdaq: ALNY) has led the translation of RNA interference (RNAi) into a whole new class of innovative medicines with the potential to transform the lives of people afflicted with rare and prevalent diseases with unmet need. Based on Nobel Prize-winning science, RNAi therapeutics represent a powerful, clinically validated approach yielding transformative medicines. Since its founding in 2002, Alnylam has led the RNAi Revolution and continues to deliver on a bold vision to turn scientific possibility into reality. Alnylam’s commercial RNAi therapeutic products are ONPATTRO® (patisiran), AMVUTTRA® (vutrisiran), GIVLAARI® (givosiran), OXLUMO® (lumasiran), and Leqvio® (inclisiran), which is being developed and commercialized by Alnylam’s partner, Novartis. Alnylam has a deep pipeline of investigational medicines, including multiple product candidates that are in late-stage development. Alnylam is executing on its “Alnylam P5x25” strategy to deliver transformative medicines in both rare and common diseases benefiting patients around the world through sustainable innovation and exceptional financial performance, resulting in a leading biotech profile. Alnylam is headquartered in Cambridge, MA.

Scroll To Top