Welcome to the
Rare Bone Disease Foundation
Supporting persons suffering with Sclerosteosis
What is Sclerosteosis?
Sclerosteosis is a rare autosomal recessive genetic bone disorder, a debilitating condition that irrevocably alters the lives of the people who has it.
Thickening & sclerosis of the skeleton & skull
Widening of the jaw
Gigantism and recurring facial paralysis
Hearing loss and loss of smell
Headache and back pain
Raised intracranial pressure which can be life threatening
What we do
Educate
Patient awareness and support as well as social awareness focusing on peadiatricians and radiologists.
Support
We bring together patients and their families to support each other living with the same rare bone disease.
Research
We support further research in finding a cure for sclerosteosis.
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