What the HHT?
A blog for the HHT community
Posts by Ashley Watkins
HHT Kids Day – San Francisco
Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing day of learning and fun! Did we mention it’s FREE! It’s a great way to meet HHT families in your area, share experiences, and learn more about HHT from the experts at UCSF. Space is limited. Learn more and register today!
Read MoreHHT Global Awareness Day
Global HHT Awareness Day is just a few days away. Did you know, this date wasn’t chosen at random? It honors the life of Grace Nolan, who sadly passed away at the young age of 9 from complications of HHT. Since then, her family has championed for HHT awareness and research. This year marks the 25th anniversary of Grace’s tragic passing. The Grace Nolan Foundation has generously agreed to match the first $25,000 we raise on June 23rd! Your gift will be DOUBLED!
Visit our HHT Changemakers page today to hear Grace’s story, learn how you can get involved this June and to donate. Learn more >>
Read MoreOnline Education: Drive Research
YOU asked us to educate the medical community on HHT so we created the perfect incentivized program! Learn more about our new HHT Continuing Education Credit Online Platform in Part 2 of our HHT Changemaker online learning series.
Cure HHT’s Melissa Dickey, RN, MSN FNP, will teach you how to get your local providers signed up for our free HHT education program. Register now >>
Read MoreOnline Education: Drive Research
By participating in research, you can drive change, and it is the ultimate way to be an HHT Changemaker! We are thrilled to offer two new exciting opportunities for you to do just that through HHT Connect and the Cure HHT BioBank.
In Part 1 of our HHT Changemaker online learning series, Cure HHT’s Courtney Kasturiarachi, MPH, will walk you through everything you need to know about HHT Connect: The Global Patient Registry. Hear more about what this means for HHT patients, what exactly is involved and how to enroll!
Then, Cassi Friday, PhD, will present on how your tissue donations to the Cure HHT BioBank can propel HHT research! Q&A to follow both presentations. Register today!
Read MoreJune Awareness – Be an HHT Changemaker!
June marks one of the most important months in the calendar year for those who suffer from HHT, as it’s National HHT Awareness Month. This year we are focusing on “HHT Changemakers” – celebrating the incredible strength, resilience, and commitment of our mighty community in our fight against HHT.
You don’t have to be a researcher or physician or scientists to be a Changemakers – Changemakers are individuals just like all of you! Patients, caregivers, supporters and friends who tirelessly advocate for greater awareness, better treatment, and – one day – a cure. Your passion and dedication inspire us every day, and together, we can achieve remarkable things. When we come together as a community to fight for the change we want to see, we are all changemakers. Learn the many ways you can become an HHT Changemaker today! Learn more >>
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