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Fibrodysplasia ossificans progressiva (/ ˌ f aɪ b r oʊ d ɪ ˈ s p l eɪ ʒ (i) ə ɒ ˈ s ɪ f ɪ k æ n z p r ə ˈ ɡ r ɛ s ɪ v ə /; [1] abbr. FOP), also called Münchmeyer disease or formerly myositis ossificans progressiva, is an extremely rare connective tissue disease in which fibrous connective tissue such as muscle, tendons, and ligaments turn into bone tissue (ossification).
Close to 90% of FOP patients worldwide are misdiagnosed. [8] In such circumstances, the association directly supports research, makes information about FOP including symptoms and treatment guidelines available to both physicians and families, and supports afflicted families with mentoring, family meetings and an information network.
Medical algorithms based on best practice can assist everyone involved in delivery of standardized treatment via a wide range of clinical care providers. Many are presented as protocols and it is a key task in training to ensure people step outside the protocol when necessary.
The Mütter Museum notes that she "advocated for more research, established networks of communication with others with FOP, and educated both the public and medical professionals about the disease." [ 2 ] She was involved in the International FOP Association , or IFOPA, and cut the ribbon at the opening of UPenn's FOP Research Laboratory.
Osteitis fibrosa cystica (/ ˌ ɒ s t i ˈ aɪ t ɪ s f aɪ ˈ b r oʊ s ə ˈ s ɪ s t ɪ k ə / OSS-tee-EYE-tis fy-BROH-sə SIS-tik-ə) is a skeletal disorder resulting in a loss of bone mass, a weakening of the bones as their calcified supporting structures are replaced with fibrous tissue (peritrabecular fibrosis), and the formation of cyst-like brown tumors in and around the bone.
After living with a rare, disabling, and currently incurable genetic disease, Eastlack decided to have his skeleton and medical history donated to the Mütter Museum of the College of Physicians of Philadelphia in support of FOP research. His skeleton is one of the few FOP-presenting, fully articulated ones in existence, and it has proved ...
A disease-modifying treatment, disease-modifying drug, or disease-modifying therapy is a treatment that delays, slows or reverses the progression of a disease by targeting its underlying cause. [1] They are distinguished from symptomatic treatments that treat the symptoms of a disease but do not address its underlying cause. [2]
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