This website is intended for audiences outside the United States.

Changing minds.
Changing lives.

Hello and welcome to Rare2Aware, the interactive and inclusive place for people living with a rare disease.

From patients to friends, from colleagues to family members to caregivers, we’re here to help you tell your story. Share your experiences. Give information. Send us your stories of how you’re living your life – and how you can help and inspire others.

This information should not be used in place of advice from your general practitioner or other healthcare professional. If in doubt please contact your doctor for advice.

Living with rare diseases

Every day we all face and overcome incredible challenges. We think it’s time we told the world what we all achieve.

We all have a story. Are you ready to tell yours? Tell us your story

Learn more about these rare diseases


My son doesn’t see himself as a sick person, neither do I. Fabry may be part of what we have to deal with on a daily basis, but it’s not who we are.

Gina's Story