Rare Disease Day takes place on the last day of February each year. The goal of this day is to raise awareness and generate positive action for the rare disease community. Alpha-1 Antitrypsin Deficiency (Alpha-1) is a rare genetic condition that can cause damage to the lungs and/or liver.
On February 28th, 2025, the Alpha-1 Foundation—along with Alphas, patient organizations, politicians, caregivers, medical professionals, researchers, and industry partners—will come together in solidarity to raise awareness of Alpha-1 as one of these rare diseases.
This year’s theme for Rare Disease Day is “More Than You Can Imagine”, highlighting the various types of rare diseases worldwide. Alpha-1 is 1 of over 7,000 rare diseases and is symbolized by the color purple.
Throughout the entire month of February, A1F will generate awareness of Alpha-1 as a rare disease and encourage Alphas on all social media platforms, including Facebook, Instagram, LinkedIn and X, to get involved in the month leading up to Rare Disease Day.
The digital toolkit, comprised of social media graphics, rare disease statistics, and a section for submitting personal Alpha-1 stories, encourages the community to get involved. Click here to access.
Be part of Rare Disease Day Awareness events all month long!
Register to attend the Phoenix A1F Education Day – Saturday, February 22, 2025.
Register to attend the FDA- NIH Rare Disease Day – Thursday, February 27 – Friday, February 28, 2025.
I was diagnosed at age 62, only because my cousin, 16 months older, was diagnosed and told me to get tested. When I told my pulmonologist, he looked at my CT and said he didn’t see evidence of it there. I knew I was in trouble getting him to understand A-1, so contacted the foundation, who tested me for free, and lo and behold, sadly I had it. Grateful for the aloha foundation.
I would love to get more information on alpha-1 . I have this awful disease and I’m need to learn ways of dealing with this problem…