Raise Awareness

Awareness Completes the Puzzle

There are many pieces to the HHT Puzzle but WITHOUT AWARENESS OF THIS DISEASE:

  • We may be missing scientists outside of our community who have the key to a genetic cure;
  • We may be missing educational opportunities through social media, school systems and medical associations;
  • We may be missing opportunities to treatment more patients with knowledgeable health care professionals;
  • We may be missing critical funding needed to advance our strategic initiatives that will impact the quality of life for people around the world;
  • We may be missing the chance to save a life!

Over the last decade, the HHT Foundation, now known as Cure HHT, has made great strides in promoting and funding education, research and treatment of this disease but, for the first time ever, we are investing in marketing HHT. WE have increased awareness through agencies such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). WE have educated and approved fifteen treatment centers in the United States. WE have spoken at medical association meetings and presented HHT cases at Grand Rounds. WE have hosted a national, regional or scientific conference every year to teach patients, physicians or scientists about HHT. WE have produced an educational video and posted it on YouTube and our website for all to see.

Now, it is YOUR TURN to be a DIRECT CONNECTION to the CURE of HHT!

It shouldn't take 14 years for a patient to be diagnosed with HHT! We all need to educate our friends, family members, doctors, dentists, school nurses about this disorder. Awareness is the key to diagnosis and diagnosis is necessary to save lives. Join Cure HHT in creating awareness all year long.

More Than A Nosebleed: HHT

WATCH THE VIDEO and share it with your family, friends, colleagues, and doctors!

The video production More Than A Nosebleed: HHT is the result of a collaborative effort between Cure HHT, HHT families, and physicians, with the initial concept support provided pro bono from the Bernstein Rein advertising agency.

Campaign Goal: to improve the lives of all HHT families by building general public and medical awareness of HHT; to increase identification of patients; to guide patients to helpful resources; and to increase HHT research funding. We want to make sure that:

  • Your children, grandchildren, and future generations do not go through what past generations have endured;
  • Tragic cases of people who have not been diagnosed or were misdiagnosed are eliminated so that no one has to suffer dire consequences of this disease; and
  • Ensure that everyone with HHT receives the most up to date care available.

Cure HHT’s Marketing & Awareness Committee, headed by Vice-President Terry Thompson, Jr., has been hard at work increasing HHT Awareness to the public and medical community. Cure HHT has invested in the production of this professional video, creating a new landing page on our website to showcase the video, and developing online toolkits to make resources available to all who want to make a difference. Please SHARE THIS IMPORTANT VIDEO with all of your family and friends, along with a heartfelt and personalized message about the importance of HHT awareness.

It is especially critical that you, your family, and your friends TAKE ACTION NOW. Your investment in increasing HHT awareness will result in more knowledgeable physicians in your hometown; new HHT families learning about this disease so people get proper screening and treatment; and making HHT a disease that is recognized by national agencies, such as CDC and NIH. All of these results will lead to more HHT research which is necessary to find a cure!

We are proud of the commitment made by the Cure HHT Board of Directors to fulfill the intention of increasing HHT awareness with the launch of this project. This video is one example of a powerful return on your investment in your family's future.

Share Your Story & Create Movement

Simply sharing your story and facts about HHT disease is as easy as writing a simple letter to the editor of your local paper, sending emails and messages to everyone you know. Your effort can go a long way to raising visibility of HHT in your local community.

To get started, jot down some ideas about what you’d like to communicate. Perhaps you have been living with HHT for years and want to spread awareness. Maybe you have a loved one or friend living with HHT or maybe you have raised funds through a Cure HHT Team event in their honor. No matter the reason, no one can tell your story about HHT better than you.

Idea starter: If you could confront HHT disease, what would you say? Well, here is your chance! Grab your camera, phone, tablet or computer and share your story of how HHT as affected you. It could be a simple photo or video, or you can be more creative in expressing yourself. Whether you are living with HHT, a caregiver, or medical professional, or know someone with the disease, we want to hear your stories. If you are sharing online, sure to tag your story with #DearHHT or #CureHHT.

Ways to Use Facebook® to Raise Awareness

1. Follow the Cure HHT Page and Check Out the Facebook Groups.

There are many who come together through Facebook to ask questions, share their stories and get advice about managing HHT. We highly recommend following our Facebook page here for the most up-to-date information about this disease!

Did you know you can also fundraise for Cure HHT through Facebook? To learn more, visit our Facebook page today! 

2. Need Birthday Present Ideas? Set up the option in your Facebook account and ask your friends to make a donation in honor of your birthday to Cure HHT.

3. Have a coloring day with your kids using our new Cure HHT Coloring sheet. Post photos of the finished project and tag us in the caption.

Join in the Global Conversation On Twitter®! 

1. Tweet About #HHT. For those of you who are new to tweeting, we have below are twitter-ready tweets to help get you started.

What is HHT?:

#CureHHT 1 in 5000 Americans have #HHT, a genetic disorder that can lead to tragedy if untreated.
#CureHHT 1 in 5000 Americans have #HHT, a genetic blood vessel disorder that affects all ages.
#CureHHT 1 in 5000 Americans have #HHT. Symptoms can masquerade as other diseases & be misdiagnosed.

Because 30 Years is Too Long for a Diagnosis:

#CureHHT It can take up to 30 years to be diagnosed with #HHT #AwarenessIsChange.
#CureHHT Diagnosing #HHT disease can take up to 30 years! #TIL #AwarenessIsChange
#CureHHT Imagine waiting 30 years for a diagnosis! Imagine if you didn’t have 30 years to wait!.

Did You Know? Symptoms of HHT

#HHTAwareness Do you get frequent nosebleeds doing everyday activities? Learn more about #HHT.
#CureHHT Do your family members have unexplained nosebleeds? Learn about genetic testing for #HHT.
#CureHHT Do frequent nosebleeds run in your family? Ask your doctor about genetic testing for #HHT .

2. Follow the Foundation on Twitter and Re-Tweet Our Tweets. Connect with us on Twitter.

3. Use Common Hashtags.  #CureHHT. Other commonly used hashtags: #HHT, #HHTCommunity #HHTEducation and #HHTAwareness

It’s Easy to Create Your Own Event 

Turn a Dinner Party, Backyard BBQ, etc... into an Awareness Event! Participants in Cure HHT Team all across the country are combining their passions and commitment to the Foundation to host successful fundraising events. Join others by creating your own unique event that combines your passions and interests. Contact [email protected] to receive the Cure HHT Team resources and tools that you’ll need to create a successful event!

Need  additional ideas? 

  • Do you love hosting brunch or a pancake breakfast for family and friends? Invite your local community to participate in a pancake breakfast or brunch to benefit Cure HHT!
  • Is golf your favorite sport?. How about hosting a golf tournament to benefit Cure HHT!
  • Who doesn’t love brownies at 3pm? Host a bake sale at your office, at your church or at your school! All proceeds can benefit your Cure HHT Team fundraising!
  • Stay cool by hosting a car wash! Accept donations in lieu of payment for the service and enjoy staying cool on a hot day with lots of water and suds.