What is the Rare Genes campaign?
Rare Genes refers to the genetic changes that cause Usher syndrome, a rare inherited condition. Usher syndrome is autosomal recessive, which means any child who inherits two mutated copies of an Usher-related gene - one from each parent - has a 25% chance of developing this condition.
Rare Genes gives us an opportunity to transform the medical model of disability, which focuses on diagnosis and treatment, into a social model. This means prioritizing accessibility, community, and connection while also engaging in research toward medical advancements.
Rare Genes highlights how these rare genetic changes causing Usher syndrome brought a global community together.
Rare Genes empowers the USH community to reclaim your narrative by focusing on what you can do, even in a world that isn’t always designed for you.
The global USH Community is united by an inherited condition that affects an estimated 400,000 people worldwide. While that number is significant, it represents just 0.005% of our global population of over 8 billion.
Yet within that small percentage lies a powerful community - YOU. Connected through Usher syndrome, you are part of a global network built on shared experiences, resilience, and strength.
Coming Soon
This week, we’re launching the new Rare Genes science education series on genetics and Usher syndrome!
There’s so much more on the horizon, and we can't wait to share it with you in the coming months. We’re partnering with the Usher Syndrome Society to reintroduce the Usher Syndrome Data Collection Program (USH DCP), to help bridge the gap between research and the community.
We’re also thrilled to welcome Yael Saperstein as our new Community Enrollment Coordinator for the USH DCP. Yael is an expert on the enrollment process, accessibility, and guiding new participants every step of the way. Have questions? Yael is an incredible resource. Contact Yael here: y.saperstein@usher-syndrome.org
That's just the beginning - stay tuned for more!
