Helping Patients to Stand With HPP: Creating a Community-Focused Website For Alexion and its Patients
- Published: Friday, 21 June 2019 22:43
Hypophosphatasia (HPP) is a rare genetic condition that adversely affects the development of healthy bones. Patients with HPP have soft or weakened bones that can result in skeletal deformities, fractures, dental issues, and pain. Patients with HPP can also have brain, muscle, joint, lung, and kidney problems. HPP can have devastating physical effects that impact the daily lives of those suffering from it. Healthcare professionals typically focus on providing treatments for the physical manifestations of a disease and may not fully understand the emotional and psychological tolls HPP can have on patients and caregivers. Alexion recognized that patients living with HPP, as well as their families and caregivers, had limited resources available for information and support. These patients also had no online forums for sharing their experiences or fostering a sense of community. Furthermore, much of the information available portrayed the condition in an overwhelming or frightening fashion.
Click here to read full article in PDF format.