EP3 – David Rose, an Ultra-Rare patient advocate and Business Development at Rare Revolution Magazine

David shares a little about his conditions, Occipital Horn syndrome and Postural Orthostatic Tachycardia Syndrome (PoTS). He shares the early historical link between Ehlers-Danlos syndromes and Occipital Horn in the link to connective tissue and iron storage disorders. We also dive into condition overlap, rare and not-so-rare conditions, and more.

Also, can rare and comorbid conditions work together to help increase awareness? 

Listen to hear more about how social media helps make these critical connections.

To find out more about the Rare Youth Revolution internships, contact Rare Revolution and direct your inquiry to Chelsea. You can find their LinkedIn page below. 

Rare Revolution on LinkedIn

Don’t miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on FacebookInstagramand Twitter. You can find host Kimberly on LinkedIn at @kattague.


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