If you have any questions about the HPP Registry please contact
Alexion Clinical Trials via email at ClinicalTrials@alexion.com

Patient organizations provide information, advocacy, networking, and support resources for affected people and their families. The list below includes links to groups that might be helpful. This list is intended to be informative only, and is not necessarily comprehensive.

Hypophosphatasie Deutschland e.V.

Hypophosphatasie Deutschland e.V. (HPP e.V.) is a Germany based non-profit association that aims to educate the public and medical professionals about hypophosphatasia, support affected families, and aid research into therapies.

Hypophosphatasie Europe

Hypophosphatasie Europe is an association based in France that was founded in 2004 by a patient with hypophosphatasia. Their aim is to support patients and their families as well as monitor and support hypophosphatasia research.

Soft Bones

Soft Bones is 501(c)3 non-profit, US-based patient advocacy group dedicated to the community of patients, caregivers and families living with hypophosphatasia. Their mission is to provide valuable information, education and support for people living with hypophosphatasia (HPP), their families and caregivers. The Foundation promotes research of this rare bone disease through awareness and fundraising efforts.


AERyOH is a non-profit association in Spain that aims to unite and support patients affected by inherited rickets or osteomalacia as well as their families and caregivers.

Metabolic Support UK

Metabolic Support UK is a patient organization that aims to support families, raise awareness, and fund research for treatments and cures for those affected by inherited metabolic disorders.

The advocacy and support resources listed above are independent, nonprofit patient service organizations. Their listing on this website does not imply endorsement.