Stronger Together

David’s video interview with Lucy, CEO of Medics For Rare Disease


This week changemaker David speaks with Lucy, CEO of Medics For Rare Diseases about what it is like to live with the ultra-rare disease occipital horn syndrome, advocacy efforts and the I am number 17 campaign.

Occipital horn syndrome (OHS), is a genetic condition that affects the connective tissue, skeleton, and nervous system. It is caused by a deficiency in the transport of the essential mineral copper, associated with mutations in the ATP7A gene.

Below you will find the video interview and you can read David’s full experience here.

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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