XLA Life is uniting the global XLA community in community-based activism and community-focused advocacy.
We exist to unite and empower the global XLA community.
Identifying the prevalence of XLA worldwide
XLA Life is working on identifying the real world prevalence of people living with XLA. Through this initiative XLA Life will also be able to connect families, and support clinical research.
Improving the Quality of Life (QOL) of those affected by XLA
Research cites that the age of diagnosis for people living with XLA is as an important factor in establishing overall quality of life. XLA Life is working on establishing protocols that improve standards of care post XLA diagnosis.
Partnering with the greater rare disease community
XLA Life is working on designing initiatives that will allow for the development of collaborative opportunities with the greater rare disease community. Establishing partnerships across the rare disease community will empower people living with XLA through the power of unity.