"You can put them in a bubble, or you can continue to live your life, your children are more than just the title of MPS" - Jenn, Anisa's mother

Ben established the Pompe Support Team with other Pompe patients because he believes "Actually talking to patients is so helpful".

"It’s a silent disease, no one understands it. My friends don’t understand that it’s not about how your skin looks; it’s about how you feel on the inside."

"I had been admitted to hospitals for so long, it ignited a hunger for knowledge within me and influenced me to become a scientist."

  • Anisa

    MPS1 disease, Canada,

    "You can put them in a bubble, or you can continue to live your life, your children are more than just the title of MPS" - Jenn, Anisa's mother

  • Ben

    Pompe disease, United Kingdom,

    Ben established the Pompe Support Team with other Pompe patients because he believes "Actually talking to patients is so helpful".

  • Elizabeth

    Atopic Dermatitis, USA,

    "It’s a silent disease, no one understands it. My friends don’t understand that it’s not about how your skin looks; it’s about how you feel on the inside."

  • Luis

    Gaucher disease, Cuba,

    "I had been admitted to hospitals for so long, it ignited a hunger for knowledge within me and influenced me to become a scientist."

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