More than 800 members of the rare disease community, including 12 passionate individuals living with LAM and their families, teamed up for Rare Disease Week on Capitol Hill to champion critical rare disease issues.

The week began with a vibrant reception on Monday and powerful screenings of four compelling documentary trailers that brought to life the resilience and urgent challenges of those living with rare diseases.

Tuesday was a dive in day of learning about policy priorities for the rare disease community. At the top of the list: Ensuring steady and robust federal biomedical research funding and public health agency support.

On Wednesday, LAM advocates met with their respective legislators to tell their stories and advocate for rare disease priorities. Meetings were held in the offices of Senate and House leaders on Capitol Hill. The LAM community’s voice was amplified during this critical week of legislative considerations and decisions. The motto for the week: Together we are strong!

Thank you to Bryan and Karen Kinsey, Abigail Passeri, Kate Musgrove, Beth Daugherity, Helen Grice, Patti Bébien-Aronoff, Sarah Alexander, Jessica Barcellona, Nicole Kilburn, Cindy Beasley, and Mary Stojic, who dedicated their time to traveling, learning, and speaking with their representatives. Patient stories serve as a formidable catalyst for awareness and advocacy. We are grateful for these LAM advocates who shared their stories and amplified our collective voice.

Learn more about how YOU can advocate for the LAM community at www.thelamfoundation.org/advocate