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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

Organizations that focus on helping with the challenges of HPP are:

 

Canadian Hypophosphatasia Contact
http://hypophosphatasia.homestead.com

A Canadian site that provides a listing of the various symptoms as well as a worldwide mailing list support system

 

Hypophosphatasie Deutschland
http://www.hpp-ev.de

A German site written in German that helps people with HPP and their caregivers to better understand the illness.

 

Hypophosphatasie Europe
http://hypophosphatasie.com

A Web site that offers information about HPP, including patient stories, patient rights, and research in Europe.

 

Hypophosphatasia Yahoo Group
http://health.groups.yahoo.com/group/Hypophosphatasia

A site where those in the HPP community can ask questions and learn from others.

Requires a sign-up with a Yahoo ID to see conversations and ask questions.

 

Soft Bones: The US Hypophosphatasia Foundation
http://www.softbones.org

Started in the United States in 2009, Soft Bones provides information and a community that educates, empowers, and connects patients living with HPP, as well as their families, and caregivers.

 

Soft Bones US Hypophosphatasia Foundation’s Group Facebook Page
http://www.facebook.com/#!/groups/134850466526196/

An online HPP community Web site where people can ask questions and learn from others.

Anyone can read the postings, but you must have a Facebook account to ask questions and interact with members.

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