Today, the Alpha-1 Foundation – along with Alphas, patient organizations, politicians, caregivers, medical professionals, researchers, and industry- will come together in solidarity to raise awareness of Alpha-1 Antitrypsin Deficiency (Alpha-1) as one of these rare diseases. Rare Disease Day takes place on the last day of February each year. The goal of today is to raise awareness and generate positive action for the rare disease community.
Alphas, friends and family joined together on Saturday at the Orlando Alpha-1 Education Day to walk in honor of Rare Disease Day. You can still purchase your Alpha-1 Rare Disease Day Walk T-Shirt. Simply, register for the walk and spread awareness all year long. CLICK HERE TO REGISTER
Rare Disease Day at NIH is taking place today both in-person and virtually from 9:00 am to 5:00 pm ET. This year’s event features panel discussions, rare disease stories, virtual exhibitors and scientific posters. The Alpha-1 Foundation is proud to attend and exhibit today with leading experts in the Rare Disease field, as well as, other Rare Disease organizations to raise awareness about these disorders, the people they affect, and NIH collaborations that advance research for new treatments. This event is free and open to the public. CLICK HERE TO REGISTER
You can also help spread awareness by downloading our digital online toolkit and sharing official Alpha-1 Foundation content on your social media accounts. Use the hashtags #Alpha1Awareness and #RareDiseaseDay and tag the Alpha-1 Foundation on Facebook, Twitter and Instagram!
Did you know?
300 million people worldwide live with a rare disease
Alpha-1 is just one of 7,000 rare diseases worldwide.
72% of rare diseases are genetic.
Share your Alpha-1 story with us! Whether your loved one has been diagnosed or you yourself are an Alpha, we want to hear your Alpha-1 story of living with a Rare Disease. Connect with others who may be going through a similar experience by sharing your story in the comments section of the Alpha-1 Foundation Rare Disease Day page.