Help me share
Help me share
One person shares with a hundred. Those hundred share with a hundred more. Somewhere along that chain is someone with the same diagnosis as me, or a doctor who has never heard of it.
Three ways to help
1
Share a post
Pick a text below, copy it and publish. Feel free to put it in your own words, it works better that way.
2
Tag anyone who might want to know
Rare disease charities, dermatology, rheumatology, dentistry, health journalists, parent groups.
3
Mention the page when it fits
If you come across a post, a group or an opportunity where this belongs, drop the link.
Ready-made texts
Someone very close to me lives with Parry-Romberg Syndrome, a rare disease affecting around 1 in 250,000 people, in which one side of the face slowly loses volume over the years. She has started writing her story so more people know this exists. If you can, share it: https://morethanmyface.com
Honest question: had you ever heard of Parry-Romberg Syndrome? Almost nobody has. That is exactly why this page exists. Two minutes to read, one second to share: https://morethanmyface.com
If you work in healthcare, in the media or for a patient charity, this site may be of interest. A first-person account of living with Parry-Romberg Syndrome, alongside a sourced clinical information page. https://morethanmyface.com
The link
This is the one worth spreading.
https://morethanmyface.com