Public Demonstration

Advocacy.

XLA Life is uniting the global XLA community in community-based activism and community-focused advocacy.

 
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RSVP for the next
XLA Life:
Fireside Chat

August 23, 2022

12:00 PM Eastern Time (New York)

 
 

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.

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Understanding XLA