Meet Margaret Robb
Meet Margaret Robb What is your relationship to HPP? I am the Communications Manager and Patient/Caregiver Navigator. I create content for our social media platforms…
Patient of the Month- Ray T.
If you would like to make a donation to Soft Bones in honor of Ray, please click the button below! Donate Here If you were…
Meet Sue Krug
Meet Sue Krug Relationship to HPP: I am a patient with HPP. I have two mutations, one from each of my parents. Since the moment…
Patient of the Month- Jaycob B.
If you would like to make a donation to Soft Bones in honor of Jaycob, please click the button below! Donate Here Jaycob B. Age…
Meet Charlene Waldman
Meet Charlene W. Relationship to HPP: I have worked in the rare bone disease field for many years serving as Executive Director of The Paget’s…
Patient of the Month- Janni K.
If you would like to make a donation to Soft Bones in honor of Janni, please click the button below! Donate Here My name is…
Caregiver Corner- Ellen K.
My parents and I have one HPP gene. My younger sister has two HPP mutations. With her in a wheelchair and being short I do…
Spring 2024 Newsletter
To view the Newsletter please click the link below: View the Spring 2024 Newsletter
Meet Judith Harris
Meet Judith Harris Relationship to HPP: Region Lead for Northeast. I have been diagnosed with juvenile-onset HPP. Joined: May 2019. It’ll be five years in…
