Introducing the DAY Tool
A new way for people with rare diseases and their families to share their stories, and contribute to a growing library of videos documenting all 7000+ rare diseases.
The Power of Video
For years, our documentary crews have gone to participants' homes to capture video of what living with their rare disorder looks like. The videos give viewers a glimpse into the lives of individuals with rare disorders, showing what the symptoms are, and how they affect quality of life and daily living tasks. Videos also allow participants and their caregivers to share their knowledge and experiences, allowing viewers to learn about the realities of different rare diseases on a deep level.
Often, when we would film families, they would share with us home videos that they took to show a challenge they were facing, an intervention they were trying, or an important moment in their life.
These home videos became some of the most powerful images in our documentaries, and helped to paint a portrait of what life with different rare disorders is like.
Sam at Her Bat Mitzvah
Sam, who has familial dysautonomia, has difficulty balancing when standing and walking. In this home video from her bat mitzvah, you can see how she sometimes requires support from others to keep balance.
Wells Babbling at a Young Age
When Wells was very young, he was very talkative, but as he neared his first birthday, he became much quieter. This clip demonstrates how video can show changes in behavior over time.
Wells Babbling at a Young Age
When Alex was young, she began having frequent seizures. Her parents took videos of these seizures in order to show doctors so that they could be correctly identified.
Patients & Families Are Experts
Now we’re building the DAY Tool, an online application to help individuals with rare diseases and their families share their stories. When you submit videos with the DAY Tool, your stories will be added to the See System Rare Disease Video Lexicon, a searchable online database of videos covering all aspects of life with different rare disorders.
By using the DAY tool to share your story, you’ll be helping clinicians, researchers, medical students, caregivers and other individuals with rare diseases and their families understand the symptoms and challenges caused by your rare disorder, and how they mean for you.
Sharing your story and knowledge brings others closer to the goals of improving diagnosis, treatment, and quality of life with rare disorders.