Virtual Meet-Up: COVID-19 “Mind Over Matter” (recorded)
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…
Read MoreAnnouncement from Cure HHT Executive Director (COVID-19)
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…
Read MorePatient & Physician Conference – Washington (Postponed)
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…
Read MoreWalk & Talk – Aurora, Colorado (POSTPONED)
Aurora, Colorado Our inaugural Cure HHT Walk & Talk Event in Aurora, Colorado has been postponed due to concerns related to COVID-19. Check back soon for updates on open registration.
Read MoreBBC News: Jersey woman calls for more awareness of rare condition
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.
Read MoreDonegal News: Letterkenny man shares story to mark Rare Disease Day
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.”
Read MoreWMAR Baltimore: Musician with rare disease overcomes health scare
March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare…
Read MoreBusiness Insider: 39-year-old mother of three in the UK, suffered from daily nosebleeds
March 9, 2022 | Business Insider | By Lauren Crosby. After a lifetime of constant nosebleeds, a woman found…
Read MoreHHT on the TODAY Show: “Mommy I love you. My head hurts.”
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT…
Read MoreWFMZ-TV 69 News reports on HHT-HTC Openings
There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel…
Read MoreMeta: Accelerating Research on Rare Diseases
March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of…
Read More