COMMUNITY CHAMPIONS
We are committed to the people living with rare diseases, their families, patient advocacy organizations and health-care providers. Learn more about belonging to the Community of US.
“Today I live my life with a sigh of relief that we live in a time in which we can learn about and combat Fabry. I believe each one of us can play our part to teach someone and reach out.”
—Jorge
“ I became a Fabry Champion because I wanted to help educate people in Mexico about rare diseases. Many people with Fabry don’t have much money or access to resources. There needs to be more awareness of the impact of Fabry on both patients and loved ones.”
—Andrea
“After learning that Fabry can be inherited, I can’t help but imagine what my mother’s life could have looked like if there had been more information and resources available.”
—Darrick
“After learning that Fabry can be inherited, I can’t help but imagine what my mother’s life could have looked like if there had been more information and resources available.”
—Darrick
“People might be sad or feel depressed when they see the diagnosis. I can show them a face that is happy and uplifting. Tell them to take it a day at a time. I can help them look at it differently.”
—Haley
“Fabry disease is part of who I am, but I can’t let it define me. Every patient is different and has their own story.”
—Wojciech
“Many friends, coworkers, and even most health-care professionals are not familiar with Fabry. So besides ‘Mom’, ‘wife’ and ‘caregiver’, I can add ‘educator’ to my list of roles, too.”
—Sabina
