Born in 2022, XLA Life was founded as the world’s first XLA-specific patient foundation
70 years earlier at Walter Reed Medical Center, Dr. Ogden Bruton identified and treated the first patient with X-linked agammaglobulinemia (XLA). Immunoglobulin therapy greatly improved the lifespans of XLA patients. Developments in therapy further improved quality of life, but XLA patients still remain Despite being the first primary immune deficiency identified, XLA still has an age of diagnosis around ____ [cite]
XLA Life aims to increase awareness, advocacy, and research for XLA. We want to bring XLA back to the frontiers of advocacy and medicine, just as it was when it was first discovered.
The rare disease landscape is developing rapidly. Advancements in precision medicine, gene therapy, and plasma product technologies made rare diseases a viable market for research and development. The global rare disease market is estimated to be $547.5 billion by 2030.
The future of rare disease is optimistic across many modalities. Next generation therapies like gene therapy bring the possibility of a cure closer, recognition of mental health problems revealed a new side of rare disease. Through all this transformation, it is important to remember who is at the center of the rare disease ecosystem - Patients and families.
XLA Life was created to ensure that the patients, caregivers, siblings, all those affected by XLA have a voice in the developing rare disease environment. We can leverage our experiences with XLA to demand a seat at the table, and improve the system for all.