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Managing Stress and Emotional Hurdles in HHT (recorded)

May 21, 2020

Dr. Abbey Hughes, board-certified rehabilitation psychologist and assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine, discusses how to manage stress…

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Virtual Meet-Up: New Cure HHT Resource Library (recorded)

May 20, 2020

On May 20, 2020, Nicole Schaefer, Director of Medical and Scientific Programs and Phyllis Loveland, Operations and Communications Manager took a look into all that the new Cure HHT Resource…

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Cure HHT 2020 Newsletter Image

Cure HHT Spring 2020 Newsletter: Now Available!

April 30, 2020

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Palmer-Mind Over Matter

Virtual Meet-Up: COVID-19 “Mind Over Matter” (recorded)

March 26, 2020

On March 26, 2020, Sara Palmer, PhD, retired psychologist, Cure HHT President and author, along with Cure HHT Operations and Communications Manager Phyllis Loveland,  addressed the stressors surrounding COVID-19, social…

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Announcement from Cure HHT Executive Director (COVID-19)

March 19, 2020

A Message from Cure HHT Executive Director, Marianne Clancy To our HHT Community: Two years ago, we coined the phrase #InThisTogether as part of our annual year-end appeal.  Now more than…

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Patient & Physician Conference – Washington (Postponed)

March 5, 2020

Hyatt Regency – Bellevue, Washington **POSTPONED** Join us at our Patient & Physician conference in Washington for a unique education experience in the near future! This conference has been postponed from…

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Cure HHT’s 2024 Impact Report

December 16, 2024

A Year Of Significant Transformation & Progress Every year is a different chapter in our story – each bringing…

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Press Release: Diagonal Therapeutics to Present Data at ASH 2024 Demonstrating the Economic and Clinical Burden of HHT

December 3, 2024

Diagonal Therapeutics — who has raised $128 million in Series A funding to support their sole project, a curative…

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Press Release: Vaderis Receives FDA Fast Track Designation for Treatment of HHT

November 18, 2024

The below press release was issued Monday, Nov. 18 by Vaderis Therapeutic, and is substantial news for our community. Cure HHT…

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BBC News: Jersey woman calls for more awareness of rare condition

April 13, 2023

BBC Jersey (UK) Jersey woman calls for more awareness of rare condition – “A Jersey woman who has a rare genetic condition that affects her blood vessels is calling for greater awareness of the disorder…Chelsea Ford, 27, is the only diagnosed case in Jersey but it is believed to affect about one person in every 5,000. “The fact it goes so undiagnosed, there could be people who do have it and don’t know what is wrong,” she said.

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Donegal News: Letterkenny man shares story to mark Rare Disease Day

March 5, 2023

Donegal News (Ireland). Letterkenny man shares story to mark Rare Disease Day – “Letterkenny man Michael MacGinty, who suffers with a rare blood disease, has shared his story to mark Rare Disease Day. He highlighted the importance of having a conversation about rare diseases, which he says are not as rare as rare sounds.”

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WMAR Baltimore: Musician with rare disease overcomes health scare

May 20, 2022

March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare…

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Business Insider: 39-year-old mother of three in the UK, suffered from daily nosebleeds

March 22, 2022

March 9, 2022 | Business Insider | By Lauren Crosby.  After a lifetime of constant nosebleeds, a woman found…

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