Upcoming Events

NIH Hosts Rare Disease Day Event, Twitter Chat

NIH Rare Disease Twitter Chat Prior to Rare Disease Day, on Feb. 22, 2019, NIH will host a Twitter chat on rare diseases from 1-2 p.m. ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D., NCATS Director Christopher P. Austin, M.D., and CC CEO James K. Gilman, M.D., as well as representatives from the rare diseases advocacy community. Join in the conversation using #NIHchat and follow @ncats_nih_gov. Learn more at https://ncats.nih.gov/rdd and register at https://events-support.com/events/Rare_Disease_Day.   NIH Rare Disease Day Event Rare diseases affect an estimated 30 million people in the United States. On Feb. 28, 2019, NIH will host an event to raise awareness about these diseases, the people they affect, and current research collaborations. Sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center (CC), Rare Disease Day at NIH will take place on February 28, 2019 from 8:30 a.m. to 4 p.m. ET in the Main Auditorium of the Natcher Conference Center in Building 45 on the NIH main campus in Bethesda, Maryland. The event will feature interactive panel discussions on collective research models for rare diseases, patient registries, rare cancer research initiatives, and “no disease left behind, no patient left behind.” New this year will be a presentation of the first ever Zebbie award for the NCATS Rare Diseases Are Not Rare! Challenge. Other highlights include posters and exhibits by rare disease groups and researchers as well as artwork, videos, networking opportunities and tours of the NIH Clinical Center. Admission is complimentary and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

Rare Disease Day Houston

Saturday, February 23, 2019

The Health Museum of Houston
1515 Hermann Drive
Houston, TX 77004
9:00am – 1:00pm (CST)


Thursday, February 28, 2019

Texas Children’s Hospital
Auxillary Bridge
6621 Fannin Street
Houston, TX 77030
11:30am – 1:30pm (CST)


The 4th annual Rare Disease Day event will feature over 35 rare disease organizations hosting booths. Dr. Ionela Iacobas from the Vascular Anomalies Center, Texas Children’s Hospital Baylor College of Medicine will be onsite raising awareness about Hereditary Hemorrhagic Telangiectasia (HHT).  Details are available on the Houston Rare Disease Day Flyer.

To learn more about how you can engage in Rare Disease Day visit, https://www.rarediseaseday.org


7th Annual Night of Hope to Benefit Cure HHT

When: Saturday, March 16, 2019 from 5:00-11:00pm EST


Where: Plymouth Manor: Plymouth, MI


Details: Join the Nissan Family for the 7th Annual Night of Hope, an event to raise money and awareness for HHT. There will be games, auctions, dinner, dancing, and more!  To learn more about this special evening and to register as an individual attendee, table or sponsor, please visit the 7th Annual Night of Hope website.

Payment Options
Online: Visit the 7th Annual Night of Hope website.
By Check: Checks payable to Cure HHT with “Night of Hope” and number of tickets in memo line. Checks can be mailed to:
Cure HHT
PO Box 329
Monkton, MD 21111

Webinar: Screening and Treatment of Brain AVMs in HHT

Monday, March 25, 2019
7:00pm – 8:00pm EST

Have you been screened for a brain AVM? If you have a brain AVM, do you know the guidelines for screening and treatment? Arteriovenous Malformations (AVMs) represent one of the most important manifestations of HHT. Please join Dr. Issam Awad, Director of the University of Chicago HHT Center of Excellence, as he discusses the symptoms and therapeutic approaches to AVMs in the brain. The presentation will be followed by a live Q&A session so we encourage you to come with questions.

Once you register for the webinar, you will receive a personal link for logging on, as well as a call-in number. You can access the webinar on your desktop, laptop, smartphone, tablet, or other device. Or, you can simply dial in by phone and listen.

Can’t watch it that day? No problem! Still register and we’ll email you when the recording is available.

There is no cost to register! 

Register Now

Colfax Races HHT Team

May 18-19, 2019

Denver, CO

Join our HHT team at Denver’s largest running weekend! You can sign up to participate in a 5K, 10-Mile, Relay, Half Marathon or Marathon. Help us raise awareness and funds for HHT research, and don’t miss out on this incredible experience – sign up today!

Bay to Breakers HHT Team

Sunday, May 19, 2019

San Francisco, CA

Join our HHT team and walk or run the 12K course in one of the most historic (and hysterical!) races in the world. You can participate as an individual or as part of a team. For more information, visit our team’s website today!