One of the aims of Rare Disease Day is to help everyone understand what it’s like to have a rare disease. Stories about real people and their experiences convey the daily challenges best. We’re inviting people to submit their stories and videos to raise awareness of specific diseases and what it’s like to live with them. We’re also looking for your ideas about ways to participate in Rare Disease Day.

If you would like to submit a story, send us an email. Here are some things you might want to include:

• What process did you (or your child) go through in order to receive a diagnosis?
• What problems/challenges do you (or your child) experience as a result of your condition?
• How do you cope with the challenges you (or your child) face?
• What are your hopes for the future?
• Is there a message that you’d like to impart to others who are struggling with a rare disorder?

We won’t be able to publish everyone’s story. If you’d like to join the conversation, check us out on Facebook and Twitter!