HHT Awareness in a BIG Way!
This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard! Our “More Than Just a Nosebleed” billboard was perched on Route 50 in Maryland, the most traveled highway to all the Maryland beaches where approximately 30,000 cars passed this sign every single day. Can you imagine…
New HHT Center Gives Hope to Father and Son with Rare Genetic Disease
May 19, 2020 | Michigan Health | by Rene Wisely: “Nose bleeds are a less frequent tradition in the Gutowski family now as a team of doctors work together to treat their abnormal blood vessels caused by hereditary hemorrhagic telangiectasia…”
Canada Girl’s Rare Disease Inspires Her to Co-Author Book
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the finishing touches on a book she co-authored and illustrated…”
Stanford News Center: Patient Spotlight – Jennifer Cook and Nina Murphy-Cook
March 9, 2020 | Stanford Medicine |by Tracie White – “Jennifer Cook has dealt with migraine headaches and nosebleeds since she was in junior high school, but it wasn’t until much later in life, after two small strokes in her 40s, that she discovered these seemingly disconnected ailments — including strange, little red dots on…
HHT in the News: “World Rare Diseases Day: Three people on how their unusual conditions affect their lives” (Article 3)
February 27, 20202 | Irish Times | by Sylvia Thompson – “Michael MacGinty from Letterkenny, Co Donegal, says that watching family members having serious unexplained nose bleeds has been part of his life for as long as he can remember. “My earliest memories are of my grandmother constantly clutching a handkerchief that was blood-stained. My…
HHT in the News: “I have the same rare disease that killed my brother”
February 24 2020 | Independent.ie “As Rare Disease Day falls this Saturday, Katie Woods tells her story of living with HHT – a genetic blood vessel disorder…”
HHT is Rare As One!
Cure HHT has been selected as 1 of only 30 organizations out of 287 that submitted letters of interest, to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Network, which will provide funding, tools, expansion support, and training to create a larger, more integrated HHT community! Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan…
Cleveland – “Woman Undergoes Brain Surgery to Remove Deadly AVM, Caused by Rare Genetic Condition”
Cleveland Clinic – “Every time Lindsay Vos got a throbbing headache, or felt weakness on the left side of her body, she wondered how much longer she would survive. Since 2011, during her senior year at the University of Toledo, the former basketball star…”
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