Where can I find support for hypophosphatasia (HPP)?

There are many resources and community groups available.

Soft Bones is a nonprofit support and advocacy organization for people with HPP.

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.

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

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

The Osteogenesis Imperfecta (OI) Foundation aims to improve the quality of life for those living with OI through research, education, awareness, and mutual support.

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

Alexion OneSource^™ provides help with insurance, disease state information, and community connection. It is open to all patients with an HPP diagnosis.

Unmask HPP by Alexion provides educational events to help raise awareness, share information, and discuss a possible treatment option.