Share Your Story

We would love to hear your rare disease story. Whether you’re a parent or guardian supporting a child with a rare disease, a young adult navigating college and career, or an adult who has lived with a rare retinal disease for decades, your story matters.

By sharing some of your journey with others, you’re providing hope. Sometimes we need to hear the challenges and successes of others who’ve traveled this journey before us to know we’re not alone.

If you wish to share your story, complete the form below. We’ll possibly share it on social media channels, our website, eblasts, and marketing materials. If you wish to restrict what we share, please complete a publicity form (linked below) noting your preferences.

Thank you for your willingness to share!