Study: Validating a New Nosebleed Management Tool

Cure HHT, in partnership with doctors at Johns Hopkins’ Hospital HHT Center of Excellence, invites you to participate in a study aimed at validating a nosebleed eDiary tool that represents a critical element in our ability to gain FDA approval for future drugs and treatments.

Currently, a standardized tool does not exist that helps accurately capture and scale HHT patients’ data around quality of life and impact of their nosebleeds (duration, frequency, severity, etc.). By participating in the validation of this tool, you have the chance to help us develop a measurement system to help prove the benefit of future drugs and treatments during trials.

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Giving Tuesday 2022

Giving Tuesday is the largest global day of generosity – where people around the world unite, encourage good, and support organizations that are near and dear to their hearts. It’s a meaningful day for us here at Cure HHT, as we couldn’t continue to push for progress without the generosity of our mighty and incredible community. You are the fuel that keeps us on the cutting edge of research and medicine! This #GivingTuesday, which is Tuesday, Nov. 29, we’ll be highlighting some of our standout young HHT scholars!

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Owning Our Future: Introducing Our New Therapeutic Development Arm

Our mission has remained the same since our founding: to find a cure… to create a future without the unnecessary suffering, without the pain and loss. While work remains to make that future a reality, we’re excited to introduce a monumental step we’re taking to bring that future forward faster.

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Hopkins - eDiary Tool

Study: Validating a New Nosebleed Management Tool

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Giving Tuesday 2022

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Owning Our Future: Introducing Our New Therapeutic Development Arm

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14th HHT International Scientific Conference

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Become a Tissue Donor

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TDC Leaps for a Cure

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FREE Genetic Testing for Rare Diseases

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FB Live Event: Back to School (Recorded)

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Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is an inherited disease that leads to malformed blood vessels in multiple organs of the body and typically begins with nosebleeds during childhood. HHT can result in serious health problems if not promptly diagnosed and treated. Our mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

1 in
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels that affects approximately 1 in 5,000 people worldwide.
%
of people with HHT are undiagnosed