Sources of Support
Organizations that focus on helping with the challenges of HPP are:
You may feel alone when you or someone you care for has been diagnosed with a rare disease like hypophosphatasia (HPP). But others like you are reaching out to share their experiences. They have been living with HPP, or caring for others with it, for years. And they offer valuable information, insights, and tips that may help you.
Because HPP is still a rarely diagnosed disorder, it is extremely important to communicate with other patients and caregivers who may have more experience with HPP than some doctors and have become experts. To talk with others not only helps to understand one’s own disorder better, it makes one feel less alone.
—Gerald Brandt, MA
Founder, Hypophosphatasie Deutschland