Stories of Resilience

jeune syndrome

  • genetic condition support

    Genetic Condition Support

    How you can find support for your genetic condition or that of a loved one. View Post
  • MariaLuisa blowing her candles

    Made it to 30

    I turned 30 at the beginning of the month and I wanted to share why reaching this milestone means so much to a person living with a rare condition, like me.  View Post
  • Sinus Infection to Brain MRI

    Sinus Infection to Brain MRI

    For the last month, I have been up and down New York City, from Chinatown to Union Square, trying to figure out what I have. I never thought I would end up having to go to a vascular neurologists.  View Post