What the HHT?

A blog for the HHT community

Awareness

Living with HHT Book

Have you read my new book, Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia? It’s designed to tell you everything you need to know about HHT to keep yourself and your family as healthy as possible and to cope with the stresses of having HHT. I’m happy to report that the book, released…

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HHT Boston Walk and Family Day

When: Sunday, June 10, 2018 from 1-3 PM EST Where: Pinebank Promontory & Jamaica Pond Details: Join Cure HHT and the MGH HHT Center of Excellence for a day dedicated to HHT during HHT Awareness Month!  This FREE event is open to all HHT patients, families and friends who want to raise awareness, meet others who have…

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HHT NYC Walk and Family Day

When: Saturday, June 9, 2018 from 12:30 PM – 3 PM Where: Shore Road Park & Parkway | Brooklyn, NY Details: Join Cure HHT and the NewYork-Presbyterian/Columbia University Medical Center HHT Center of Excellence for a day dedicated to HHT during HHT Awareness Month!  This FREE event is open to all patients, families and friends who want…

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HHT Chicago Walk and Family Day

When: Sunday, June 3, 2018 from 10:30 AM-1 PM Where: Sunset Woods Park | Highland Park, IL Details: Join Cure HHT and the University of Chicago HHT Center of Excellence for a day dedicated to HHT during HHT Awareness Month!  This FREE event is open to all HHT patients, families and friends who want to raise awareness,…

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Legislative Activity Impacting HHT

Recently, I have taken a more active role in the HHT community as a member of the legislative committee. It is so important for lawmakers to pass legislation that promotes and supports research and development, especially for rare diseases like HHT. I have been pleasantly surprised at how passionate I am about advocating for legislation…

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