In this week’s episode, it is a pleasure to introduce David Rose, as ultra-rare disease patient speaker and advocate. For 8 years, he has been advocating his ultra-rare condition called Occipital Horn Syndrome. As marketer and business developer of Rare Revolution Magazine he has been able to broaden the voice of patients with rare conditions. When he isn’t marketing or advocating, he is volunteering at Great Ormond Street Hospital. I brought him on the show to share his journey of resilience. It was a pleasure to learn from David and his experiences. If you are needing more connection and resources for a rare disease, check out the show notes below.
https://rarerevolutionmagazine.com/
https://www.instagram.com/occipitalhornadvocate/
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