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Newly Diagnosed

HHT is a disorder you can do something about! This truly is an instance where knowledge is power.

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is a genetic blood vessel disorder that affects about 1 in 5,000 people worldwide. HHT does not discriminate… it impacts males and females, regardless of age, from all racial and ethnic groups.

You have been affected by HHT in some way. Any medical diagnosis can be scary but Cure HHT, along with our partnering medical institutions known as HHT Treatment Centers of Excellence, are here to relieve your anxiety.

You are one of the lucky ones…. It is believed that 90% of those who have HHT don’t know that they have the disease. These people are at great risk of experiencing a catastrophic event. You, however, have been diagnosed and there are physicians specializing in HHT that are waiting to take care of you and other members of your family affected by this disease.

This is a treatable disorder, and many of its more dangerous aspects are preventable. Take one step at a time and remember that we are here for you.

So I have HHT ... Now What Do I Do?

Step 1: Use the Cure HHT Resource Library for basic information and guidance.
  • Understanding your family health history is necessary to determine the lineage of the disease, which family members could also be impacted, and the manifestations of the disease in your family. Create your own Family Health Portrait and share it with your physician as well as your extended family.
  • Educate yourself about issues relating to HHT diagnosis, screening, and treatment. Be sure to note why a person suspected of having HHT should have antibiotics before dental work, and how simple screening for the internal manifestations of HHT, especially in lung and brain, can prevent disability or even death.
Step 2: Rely on us for all of your HHT questions.

Cure HHT is the only patient advocacy organization focused solely on HHT patients and their families. Contact our office by email or phone (410-357-9932). We are here for you for life. 

  • Stay Informed by subscribing to Cure HHT newsletters, educational events, scientific updates and latest treatment recommendations.
  • Begin to educate your family members about HHT; encourage them to stay connected with Cure HHT.
  • Get Involved and stand with others who are living with HHT to advocate for patients, educate healthcare providers and the public, fight for federal funding to support HHT research, and make scientific breakthroughs possible.
Step 3: Contact an HHT Treatment Center.

Cure HHT recommends being seen at an HHT Treatment Center of Excellence (COE) at least once for coordinated care provided by specialists who are knowledgeable about screening, treating and managing HHT.

  • HHT Treatment Centers possess a multidisciplinary team of experts who together can treat the many facets of HHT, including nosebleeds and brain or lung involvement. Unlike local physicians, who may have no knowledge, or at best be familiar with only one aspect of this multi-system disorder, these medical professionals look at the big picture and take an integrative approach when it comes to HHT.
  • The HHT COE can serve as a resource to your local physician about your specific condition once you've had your initial HHT COE evaluation.
  • A North American HHT Center of Excellence goes through a rigorous process of evaluation and are recognized by Cure HHT as a medical team possessing the personnel, expertise, commitment, and resources to optimally provide comprehensive evaluation, treatment, and education to patients and families with HHT.
Step 4: Continue Your HHT Education and Get Involved!

Join us and together we can make a difference.

There are many meaningful ways you can support this cause. Participate in an HHT event, share your HHT story, become an HHT Champion, or advocate for HHT patients to your local legislators. When you choose to get involved, you’re not only supporting the search for a cure, you’re supporting a community of people whose lives have been affected by this disease.

  • Get involved! There are many ways to support the Foundation's mission, from donating to volunteering, from fundraising to serving on the Board of Directors. You can make a difference.
  • Invest in Cure HHT and be the catalyst that allows us to drive research toward a cure, to find better clinical treatments and diagnosis, and to educate patients and caregivers to prevent serious consequences.
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