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Severe, Malignant Osteopetrosis Community

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Organizations and Advocacy Groups Provide Additional Resources and Support

Ryan Wersten MIOP Foundation

The Ryan Wersten MIOP Foundation was created in memory of Ryan Wersten who lived for only 6 months after being diagnosed with Malignant Infantile Osteopetrosis (MIOP), also known as Severe Infantile Osteopetrosis. The Ryan Wersten MIOP Foundation is dedicated to supporting current research and to supporting families who have a child with MIOP.

Mason Shaffer Foundation

The Mason Shaffer Foundation is a nonprofit organization that has been dedicated to creating a support network for families of children with Malignant Infantile Osteopetrosis (MIOP).

The OsteoPETrosis Society (OPETS)

The OPETS is an organization that provides education and support to people diagnosed with osteopetrosis and to medical professionals dealing with the disease. The Society also conducts informative sessions for patients through a Medical Advisory Council that provides expertise in the field of osteopetrosis.

Global Genes | RARE Project

Global Genes | RARE Project is a leading patient advocacy organization working to connect and empower rare disease patients and caregivers to become successful advocates by providing tools and resources, and creating shared lessons to educate and inform. The mission of Global Genes | RARE Project is to build and unify a global rare and genetic disease community while positively impacting patients in their lifetime.