"In these rarest of children mother nature has hidden secrets that, if uncovered, would impact all other diseases that affect the masses"
Dr Fred Kaplan, International FOP Specialist
Dr Fred Kaplan, International FOP Specialist
What is Fibrodysplasia Ossificans Progressiva (FOP)?
𝓕𝓞𝓟 𝓽𝓾𝓻𝓷𝓼 𝓬𝓱𝓲𝓵𝓭𝓻𝓮𝓷 𝓲𝓷𝓽𝓸 𝓱𝓾𝓶𝓪𝓷 𝓼𝓽𝓪𝓽𝓾𝓮𝓼:
a healthy mind locked inside a frozen body. It is an ultra-rare orphan disease which progressively turns muscles and connective tissue to bone, permanently fusing their joints and causing immobility. The malformed big toes and presentation of mysterious swellings and/or stiffness are easily identified signs but often missed due to lack of awareness. There are new research initiatives on the horizon for fibrodysplasia ossificans progressiva and trial preparations have begun and this research will impact other more common medical conditions that affect much larger groups of people. Researchers are also looking at what positive impact FOP research/treatments may have for people with childhood brain cancer, osteoporosis, chronic anemia, stem cell therapy, atherosclerosis, vascular calcification and heterotopic ossification experienced by wounded soldiers and a percentage of hip surgery patients. So please help, because the hope of children and adults with FOP rests with people like you, people who care. |
COVID19 AND FOP
If you have FOP and you get a COVID INFECTION please visit https://www.ifopa.org/other_research to participate in a study of the impact of Covid on individuals with FOP. Thank you and be well. |
EVENTS
Due to Covid 19 the CFOPN is cancelling all events that are not online. Life will go back to normal once we have received the all clear. Please be kind to each other and take care of one another.
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