What the HHT?

A blog for the HHT community

Posts by Ashley Watkins

Back to School – Nosebleed Management

A message from Cure HHT Chief Medical Officer, Scott Olitsky, MD As children begin to return to school, now is a good time to talk to your school nurse and educators about HHT and nosebleeds.  Nosebleed severity can vary widely among family members and it should always be remembered that the presence and/or severity of…

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Development of HHT Centers of Excellence

In this newsletter, we have announced the addition of The University of Florida to the North American Centers of Excellence (CoE) team.  This is great news for people with HHT living in Florida who have been looking forward to a place where they can be seen in their home state.  While people in and near Florida will directly benefit from this addition, all of us with HHT will benefit indirectly as well.  When a new center opens that means more physician experts are added to the HHT community.  This increases our knowledge about how HHT affects people, what types of treatments are beneficial and enlarges the pool of potential clinical research sites to help us develop new tests, procedures and medications which may improve the lives of all people with HHT.  It also boosts the number of medical personnel and trainees who learn about HHT that can later bring that knowledge with them when they see patients.

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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.

To help us more directly create transformative medical impact, we’ve built a new Therapeutic Development Arm of our foundation. This will allow us to be more proactive in accelerating knowledge, developing therapies, and moving faster to find a cure. With scientific advancements moving faster than ever before, this team will give us the in-house expertise to harness scientific opportunities and turn them into impact for HHT patients everywhere.

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Become a Tissue Donor

Duke University, through a separate BVMC project, is collecting vascular malformations (VMs) associated with HHT to search for somatic mutations, possibly occurring in different genes than the ones already identified. All HHT patients undergoing surgery to remove an AVM from any organ (i.e., liver, lung, brain, skin, etc.), are encouraged to consider donating  tissue. You do not need to have a brain AVM to participate in this study project.

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