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David Rose (Rare Revolution Magazine) joins “Invisible Manners”

Posted: 20.08.21

We are pleased to have David Rose (Business & Development Associate at Rare Revolution Magazine) joining the voice cast of our upcoming animated short film, “Invisible Manners”, and supporting the wider project!

David is a well known and respected rare disease advocate who understands the patient experience first-hand, as he himself is affected by Occipital Horn Syndrome, an ultra-rare condition which affects his heart, kidney, bladder, bowel and entire muscular-skeletal system. You can read more about David and the challenges he faces as a result of his ultra-rare disease in the following interview, linked here.
We often speak about the need for further collaboration in the rare disease space, and how there are so many overlaps between the patient and family experience, especially in relation to the challenges of the “diagnostic odyssey”…something which NPUK families are certainly aware of. It is our hope that with this campaign we will be able to shine a light on not just Niemann-Pick, but other rare diseases and invisible illnesses…
This is only possible with support like this, so thank you David and everyone else who is helping make this campaign happen! Yes including Ted who is also pictured…actually especially him!!