Fibrodysplasia Ossificans Progressiva | ACVR1(c.617G>A; R206H) = Klassisk FOP
Syr på min #Gullmupp-väska

FOP Ambassador at Arab Health in Dubai

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Normally I write this blog in Swedish.
But since I am leaving for Dubai the 24th of January and will attend the Arab Health Exhibition 28-31/1-2013 on a mission as a FOP Ambassador to spread awareness of one of the rarest genetic disorders known as Fibrodysplasia Ossificans Progressiva (FOP).

I hope it can help to avoid misdiagnosis and wrong treatments with unnecessary new bone formations in patients with FOP. Since FOP is that rare and unknown its very common with misdiagnosis or no diagnose at all. The doctors can’t know everything about all strange diseases that they might not even get across during their lifetime but FOP is easy to diagnose if you know about it, just look at the toes let the warning-bell ring and read this. And please take a look at this 4min video below.

Please use the google translate link on the right and take a visit around on this website.
If you like to follow my journey to Dubai please Like the page at Facebook. I will update with pictuers and short messages during the week.

At this page you find pictuers of FOP. And here you find Information about FOP reasearch short videos in English with Dr Kaplan and Dr Shore from the FOP lab in Philadelhpia USA. If you like to read more about FOP and the International FOP Association please visit IFOPAs website. “Fund Research, Find A Cure, Help Families.”

“Though no one can go back and make a brand new start,
anyone can start from now and make a brand new ending.”-Winston Churchill

Marie H Fahlberg
Vinnare av IFOPAs Jennie Peeper Outstanding International Leadership Award 2012.
Nominerad till David Legas stipendium 2012


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Stöd FOP-drabbade genom bidrag till FOP-forskningen

Bankgiro 5823-7140. Insamlings status 17/1- 2013. 32 339:-

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