We have a strong HPP community that is very active on and offline. We are active in social media on Facebook, Instagram and Twitter and we are soon launching a new community through a partnership with EURORDIS (European Organisation for Rare Diseases) which will provide translation of conversations in multiple languages.


Soft Bones has an incredibly strong group of patients and caretakers on facebook. If you or someone you know is affected, please check out Soft Bones on Facebook!


Soft Bones is now also on twitter. Got a quick question? Send us a tweet!