Welcome - Malignant Infantile Osteopetrosis (MIOP) Community

What is Malignant Infantile Osteopetrosis (MIOP) ?

Malignant Infantile Osteopetrosis (autosomal recessive osteopetrosis) is a rare congenital disorder of bone resorption characterised by generalised skeletal densification. Thus OsteoPETROSIS may be considered as the opposite to OsteoPOROSIS, where bone density is decreased. Excessive bone density can interfere with vital tissues and structures, causing serious problems throughout the body. Compression of nerves in the skull, for example, can lead to problems such as vision loss and breathing problems. It can also cause crowding of the bone marrow, which is the tissue inside the bones that produces blood cells and platelets. The specific complications and their severity depend largely on the type of osteopetrosis. Most of the life threatening severe forms of osteopetrosis can be treated by allogeneic stem cell transplantation.

Source: Dr. Ansgar Shulz

Malignant Infantile Osteopetrosis (MIOP) Resources

More members stories

Latest Member Stories

Help me save Sofia's life.

by tanialoja1985 published 6 months ago
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We lost our second child 8 years ago due to this disease. Now, our 3-month-old daughter has been diagnosed with osteopetrosis and we're desperate f...

Marija's story...

by Dinka published 9 months ago

So....my daughter Marija was born 3 weeks earlier. First few days her calcium was low and she rejected food. Doctors said that she don't have the "...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.