Join our community - share your story, help us spread the word, follow us on social media, or join our mailing list. There are plenty of ways to join us in making a real difference. Check out the opportunities to get involved below and contact us if you have any questions. We appreciate your interest.
Share Your Story
Rare diseases have a huge impact on each and every one of our communities, yet it is so rarely talked about at the same magnitude. Together, let's show the scale of impact that rare diseases truly have.
How? We want you to share your story. We want to help amplify the voices of those who are living with a rare disease or are caring for someone who does.