Information about rare diseases from the media needs to be reliable and accurate. Children living with rare conditions, and their families, need access to information that will help them live the best lives possible. It is important to raise awareness about rare diseases and responsible mass media and social media can be a way to do this. Stories need to provide facts and limit sensationalism. This will ensure that people are not more worried than they need to be and won’t make visits to the doctor or have tests that are not needed. When working with the media, rare diseases experts should encourage the media to be factual and sensible when keeping the public informed about rare disease.