On Friday, February 28th, 2025, the Alpha-1 Foundation (A1F) celebrated Rare Disease Day, bringing the entire community together in various ways to raise awareness and inspire positive action for those affected by rare diseases. Alpha-1 Antitrypsin Deficiency (Alpha-1) is a rare genetic condition that can cause damage to the lungs and/or liver, and the day served as a powerful reminder of the importance of continued advocacy for those living with this and other rare conditions.
This year’s theme for Rare Disease Day, “More Than You Can Imagine,” underscored the diversity of rare diseases worldwide. Alpha-1 is one of over 7,000 rare diseases and is symbolized by the color purple. Throughout February, A1F led a month-long awareness campaign, inviting the Alpha-1 community to join the movement. Alphas, individuals living with Alpha-1, were encouraged to get involved through social media platforms such as Facebook, Instagram, LinkedIn, and X. A1F provided a digital toolkit filled with social media graphics, rare disease statistics, and a space for sharing personal Alpha-1 stories. This toolkit empowered the community to raise awareness and share their stories.
On Rare Disease Day, A1F encouraged Alphas to take action by sending letters to Congress, urging lawmakers to prioritize Rare Disease Legislation. In partnership with the National Organization for Rare Disorders (NORD), A1F advocated for bills that would preserve or improve access to affordable, expert care for rare disease patients and their families across the country.
In Washington, D.C., Brian Pelletier and his daughter, Amber, represented A1F at Rare Disease Week, a multi-day event hosted by the EveryLife Foundation for Rare Diseases. They met with Congresswoman Chellie Pingree of Maine to discuss the foundation’s key priorities, including the reintroduction of the John W. Walsh Home Infusion Act. This act aims to improve access to home infusion treatments for Alpha-1 patients, helping them maintain a better quality of life.
On February 22, 2025, in Phoenix, Arizona, the Alpha-1 community gathered for the Phoenix A1F Education Day, engaging in an educational event that included interactive trivia and powerful personal stories shared by Alphas from the region.
One of the most impactful stories shared during the event was that of Betrice Coleman-Sweet. Betrice’s journey to an Alpha-1 diagnosis was long and filled with uncertainty. Although she was diagnosed with Alpha-1 in May 2023, her experience highlights the struggles many face when living with an undiagnosed rare disease for decades. Betrice’s story is a testament to the importance of early diagnosis and the strength that can be found in community and advocacy.
Click here to read Betrice’s full story.
In addition to Betrice’s story, others in the Alpha-1 community shared their experiences:
- Lori Mitcheroney shared her journey in an interview with a local Massachusetts newspaper.
- Norma Leising took part in a local Nevada radio interview, further sharing her personal experience with Alpha-1 and raising awareness about the disease.
- Dan Grimm spoke at Korro Bio about life with a rare disease, participation in clinical trials, and being a patient advocate for the Alpha-1 community.
- Thomas Brown, along with his mom, Jessica Brown, posted a heartfelt message on social media, raising awareness and sharing their experience of being a child living with Alpha-1.
- Dan and Kathi Coffin attended the Krystal Bio town hall to share their Alpha-1 story with the group.
Through these collective efforts, Rare Disease Day 2025 successfully highlighted the importance of raising awareness, taking action, and supporting the Alpha-1 community. Together, the community continues to fight for better recognition, improved access to care, and a brighter future for those living with rare diseases.
A heartfelt thank you is extended to the continued support of the sponsors AlphaNet, CSL, Grifols, and Takeda for their commitment to A1F and the Alpha-1 community on Rare Disease Day and all days.
There’s still time to make a difference.
Take action today by sending a letter to Congress!
