HPP: Assembling and Coordinating Your Personal Care Team Webinar
On October 30, 2019 Soft Bones held a webinar featuring Drs. Jill Simmons and Kathryn Dahir from Vanderbilt University Medical Center as they explain how…
The Emotional Effects of Living with a Chronic Rare Disease
Adrianna Tuomi, a licensed clinical social worker and Soft Bones Community Member and Region Lead will be presenting a webinar on the psychological effects of…
HPP- A Clinical Overview
What is HPP? with Deborah Sittig, Founder and Caregiver of Son with HPP and Dr. Cheryl Rockman-Greenberg, MD, CM, FRCPC, FCCMG
HPP Genetics Boot Camp – Learning More About ALPL Gene Changes and HPP in Families
Presented by The Soft Bones Foundation. Do you have questions about your family’s diagnosis of Hypophosphatasia? Are you uncertain what the risk is for other…
The Role of Vitamin B6: Implications for Hypophosphatasia
Featuring Eric T. Rush, MD, FAAP, FACMG Clinical Geneticist Children’s Mercy Hosptial Associate Professor of Pediatrics UMKC School of Medicine
Living with HPP: Sue K.
Born in 1960 with broken bones and a large fontanel they knew something was wrong. By the age of 3 months and my failure to…
My Journey with HPP Began When I Was 16
My journey with HPP began when I was 16 but I just didn’t know it. My husband, Donnie and I have been together since we…
Living with HPP: Cheryl
Hello, my name is Cheryl Jackson and my journey with HPP began last December when I was diagnosed at the age of 48, but as…
Living with HPP: Cami
My name is Cami Rush and I am the mother to three children. I have an 18 year old son, Connor (diagnosed with HPP around 18…