Today is Rare Disease Day!

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

The FDA hosted their Rare Disease Day “Intersections with Rare Disease” program virtually online yesterday
The agenda focused on four different topics that “intersect” with rare diseases including clinical trial challenges with small patient populations focusing on children and improving diversity; FDA initiatives to advance product development for rare diseases; Opportunities for patient engagement with FDA; and the role for medical students in shaping rare disease care.
It is also the 40th anniversary of the Orphan Drug Act! The enactment of the Orphan Drug Act in 1983 was a seminal legislative event–part of a decades long Congressional effort to ensure that everyone in this country with an illness has access to safe and effective medicines– and rare disease drug development has greatly accelerated since its enactment.

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.