My XLA Life
This is all about you. We want to get to know you and your XLA Life. The goal is to share your story and inspire others who are going through their own XLA lives, so be genuine and as open as you'd like.
Name
*
First Name
Last Name
Email
*
example@example.com
What is your relationship to XLA
Patient
Parent/Guardian/Caregiver
Sibling/Other Family Member
Friend
Other
Introduce yourself! Where are you from? What do you do for work/school? What are your hobbies/interests?
*
Up to 5 sentences
When did your XLA Life begin?
*
Describe events leading up to diagnosis, shortly after, and how it impacted you and your loved ones. Up to 6 sentences
What have you learned from your XLA Life? How have you adapted to XLA?
What advice would you offer to newly diagnosed families?
*
Think about those in the same position as you (patient, mother, friend, etc.)
Thank you for sharing your XLA Life
By submitting, you agree that we can contact you via email. Someone will go over your submission in 5-7 days and reach out about how you'd like your story to be shared.
Submit
Should be Empty: