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.

Join our mailing list

Get news, stories and updates straight to your inbox

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

What’s new in our community

We want to keep you in the know with all that’s happening in the rare disease community. Find out all about awareness days, specific events and the latest news here.


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.




Have you got a story?

Everyone living with a rare disease has a story to tell. Whether it affects you directly or you’re a friend, colleague, family member or healthcare professional, we all have our own challenges and ways with dealing with them.

Tell us your story

Rare Diseases Newsletter

Get news, stories and updates straight to your inbox