Rare Disease Day 2021


What do you enjoy most in life?

Family, traveling and being lucky to receive good treatments.

Meet Omar!
He is 18 years old, comes from Morocco and currently lives in Bulgaria. When he was 23 months old, he was diagnosed with the rare disease XLH. He is receiving professional medical treatment for this and has already had a necessary operation due to the rare disease. He enjoys being with his family and is grateful for the good care he receives. When Omar wants to relax he likes to listen to music, watch movies or read a book. Gad el Maleh is a comedian and film actor of Moroccan origin and really makes Omar laugh.
He is afraid of the possible pain he will face when he gets older, but has learned to love his body with all its scars and malformations. However, when things go bad for him, he always tries to be confident, which is a great character trait of him. If you would ask Omar for advice in life, he would say: “Take life seriously, be grateful you're alive and healthy and try to enjoy every second of your life.”


At what age were you diagnosed with XLH?

23 months

Who or what makes you laugh?

Gad el Maleh

Who is your role model?

I don’t have any!

How old are you?


What do you do to relax?

Listening to music, watching movies or reading.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

I am afraid of the pain that I may experience in adulthood.

What do you do when you feel bad?

try to be sanguine

Have you had any operations because of your XLH and if so, how many?

Yes, once.

What did you have to learn in your life with XLH?

To love my body, with its scars, and malformations

What advice would you give to others in your life?

Take life seriously, be grateful your alive and healthy and try to enjoy every second of your life

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