Osteogenesis Imperfecta (OI)

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Osteogenesis Imperfecta General Information

• Introduction to Osteogenesis Imperfecta
• Caring for Infants and Children for OI
• What is OI?
• Social and Emotional Issues of Living with OI

 

Pregnancy and OI

• Pregnancy: Women Who have OI
• Pregnancy: Expecting a Child with OI

 

Caring for an Infant with OI

• Infant Care Suggestion for Parents
• Caring for an Infant with OI

 

Information regarding school

• Sending Your Child with OI to School
• Advice for your child's Elementary School
• Advice for your child's Secondary School
• Including children with OI in PE classes

 

Transitioning to Adult Care

• Transitioning from Pediatrics to Adult Care

 

Testing and Treatment for patients with OI

• How to Manage Fractures
• What is Bone Mineral Density?
• Bisphosphonate Treatment
• Dental Care for People with OI
• Hearing Loss and OI

 

 

Hypophosphatasia (HPP)

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Hypophosphatasia General Information

• What is Hypophosphatasia?
• Oral Health Recommendations for People with HPP
• Patient Resources via SoftBones

 

Testing and Treatment for patients with HPP

• Strensiq Instructions for Use
• Patient and Caregiver Injection Guide
• How to Travel with Strensiq

 

Fibrodysplasia Ossificans Progressiva (FOP)

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Fibrodysplasia Ossificans Progressiva General Information

• What is Fibrodysplasia ossificans progressiva (FOP)?
• National Institutes of Health page on FOP

 

X-Linked Hypophosphatemia (XLH)

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X-Linked Hypophosphatemia General Information

• Familial hypophosphatemia
• National Institutes of Health page on hypophosphatemia
• XLH Link - Bringing people and ideas together

 

Testing and Treatment for patients with XLH

• XLH Link - Bringing people and ideas together
• Burosumab injection info sheet (English and Spanish)

 

Tumor-Induced Osteomalacia (TIO)

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Tumor-Induced Osteomalacia General Information

• Ultragenyx