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XLA Life is excited to announce its first initiative, the XLA Peer-to-Peer support group.
Background: XLA can often feel like a lonely journey. Patients/caretakers become their own experts as health providers have insufficient knowledge of rare diseases. Unfortunately, it takes years of trial-and-error to find your optimal XLA life - doctor, treatment, diet, lifestyle etc. There is a whole community of XLA families who have gone through the same process, often alone. This process adds a heavy burden to living rare. We at XLA Life believe it imperative to collect those lived experiences to help those going through the same process.
Objective: Relieve the burden of XLA by connecting those with many lived years of XLA-experience to peers with less experience.
Who can join: Everyone! We are looking for patients, caretakers/parents, siblings, friends, researchers - really anyone who has been affected by XLA, regardless of how many years’ experience with XLA.
Where to join: