Rare Disease Week on Capitol Hill 2025 is opened to everyone. Whether you’re a patient, advocate, researcher, or someone passionate about healthcare policy, you won’t want to miss this opportunity to connect with key legislative insights and inspiring real-life stories from the comfort of your home.
Rare Reels Screening: A Film Showcase (February 24-28, 2025) Kick off the week by tuning into the Rare Reels Screening. From February 24 through February 28, immerse yourself in four poignant documentaries that capture the heart, challenges, and perseverance of those living with rare diseases. This year's lineup includes:
- UNDIAGNOSED
- Go On, Be Brave
- The Tenacity of Hope
- Carry On: Finding Hope in the Canyon
Legislative Conference: Inform Your Advocacy (Tuesday, February 25, 9:00 am – 5:00 pm EST) Gain comprehensive insights into the policy priorities that are shaping the landscape of rare diseases in the U.S. This full-day conference will cover a wide range of topics essential for anyone looking to understand the current and future policy frameworks. This is your chance to learn from leading experts and equip yourself with knowledge to advocate effectively.
Rare Disease Congressional Caucus Briefing: Influence and Action (Wednesday, February 26, 9:00 – 10:00 am EST) Join the critical briefing by the Rare Disease Congressional Caucus to get firsthand information on legislative initiatives directly impacting the rare disease community. This one-hour session is pivotal for anyone interested in the nexus of rare diseases and legislative action.
Why Join Virtually? Participating in Rare Disease Week virtually ensures you have a front-row seat to groundbreaking discussions and emotionally compelling stories, all without the need to travel. This accessibility ensures that the widest possible audience can benefit from and contribute to the advocacy for rare diseases.
Take Action: Join Our Advocacy Efforts Your participation matters! Stay informed about policy proposals impacting the rare disease community and find out how you can make a difference.
This is made possible thanks to the Everylife Foundation for Rare Diseases ot only live interactions but also opportunities for Q&A sessions, allowing you to engage directly with leaders and storytellers. Set your reminders, prepare yourself.
Vist online at https://bit.ly/3D97oFV
Stay informed, stay inspired, and remember, your voice is crucial in shaping the future of rare disease policy and awareness.
Visit our blog post and learn how to celebrate Rare Disease Day!
