Rare Disease Day® is February 28th! This year, Rare Disease Month is particularly special as it marks the 40th anniversary of the Orphan Drug Act (ODA), a landmark law that has benefited millions of Americans living with rare disease, including the HHT community!
The law helps incentivize and catalyze rare disease research. With the help of ODA and years of Cure HHT’s own advocacy efforts, we now have three clinical trials underway in HHT! This rare disease month, we wanted to take a moment to celebrate the anniversary and recognize the impact it has made. But work remains and it will take all of us to continue to make meaningful progress!
As we kickoff Rare Disease Month, we wanted to share some of the ways you can help this month:
- Share Your Story — Letting our voices be heard is critical! You never know who your story will reach or impact. We encourage our community to share your HHT journey from social media, or consider submitting your story to be featured on our blog.
- Host a Facebook Fundraiser — In honor of Rare Disease month, we ask that you consider activating your network of family and friends to support our cause by hosting a Facebook fundraiser. Learn how >>
- Show You’re Rare! Head over to our store to browse a variety of Rare Disease Month items to let the world hear us and help spread awareness!
- Participate In Research — One of the biggest ways you can help create a better tomorrow is by participating in research TODAY! Visit the clinical trials section of our website to learn more about the trials that are currently underway. Learn more by watching our recent webinar related to exciting new HHT clinical trials.