Sharing Our Rare Disorder Journey
As part of our awareness campaign this September, our SS community members from around the world joined together to create a footprint in the world of digital awareness. This short video is available for viewing on several social media platforms and offers a unique window into the superficial siderosis patient rare disorder journey.
When you are a small grass-roots organization, it becomes increasingly important to put a human face on our community. Because our group of patients and caregivers is small, we have emerged from the experiences of the last few years as a worldwide family. Many may not physically be able to help, but like close family members, they want to be there for our community and the future.
The September Awareness Month Home Stretch
As we enter the home stretch this awareness month, we would like to remind you why September is critical to our mission. In a busy world, it’s easy to forget that not everyone has a personal connection to superficial siderosis. The vast majority of the world has never heard the words, let alone understand what a diagnosis means.
When we take one month out of our busy year to concentrate on superficial siderosis awareness, we put those words on thousands of screens, day in and day out. According to the experts, it takes seven repetitions for new information to become a part of your short-term memory—30 days of awareness. Just maybe, we can eclipse the short-term and grow into the long-term.