We are looking forward to gathering in person for Rare Disease Day 2023 on February 24th and February 25th. More information will be coming soon. If you would like us to contact you when registration becomes available, please fill out this form.
We seek to build a network among the various members of the rare disease community, both locally and nationally. From patients and families, to students and teachers, providers and advocates, organizations and beyond, we believe every voice matters. Our goal is to provide holistic connections, engaging educational materials, accessible research, and other services to uplift and inspire our rare community.
"I think if you want people’s perceptions to change, then it’s important to share your story. I hope that by my continuing to share my story and experiences that it will help people to better understand rare disease and disability and hopefully be more compassionate to others like me in the future."
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