Where can I find support for hypophosphatasia (HPP)?

There are many resources and community groups available, including:

Alexion OneSource™ provides help with insurance, disease state information, and community connection. It is open to all HPP patients, not only those receiving Alexion’s enzyme replacement therapy.

SoftBones.org is a nonprofit support and advocacy organization for people with HPP.

The National Organization for Rare Diseases provides information, support, and community for people living with rare diseases.

The MAGIC Foundation offers support and education to families of children with growth disorders, as well as affected adults with endocrine disorders.

Global Genes builds awareness, educates the global community, and provides critical connections and resources that equip advocates to become activists for their disease.

The Avalon Foundation provides emotional support to pediatric patients and their families during life-changing and critical transitions to help shape a healthier, more positive experience that ensures compliant practices and treatments.

The National Organization for Rare Disorders (NORD) provides advocacy and education to improve the lives of those affected by rare diseases.

Peer Connects gives patients and caregivers the opportunity to speak about their experiences living with or caring for someone with a rare health condition.

Unmask HPP provides educational events to help raise awareness and share information.