@FOPFriends

FOP is one of the rarest and most debilitating conditions known to medicine, causing bone to form in muscles. Charity #1147704

 United Kingdom
fopfriends.com
Joined January 2012
  • Tweets2.1K
  • Following519
  • Followers720
1.4KMedia
The BBS & friends in the Rare Bone Alliance celebrated the launch of the NHS Rare Disease Collaborative Network for Adult Rare Bone. It was a successful day of networking and informative talks with reps from the 19 NHS Hospitals who have joined! Read more: shorturl.at/jzI28
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This is getting a bit real now! 50k walk for FOP friends this Saturday. Never walked that far, but have trained. Link in comments if you would like to support me and this small charity that supports people living with FOP.
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To raise awareness of FOP - this weeks rheumatology teaching session was all about FOP delivered by Prof Keen. Exciting to talk about the progress made in research in the last few years. #CureFOP #FOPfriends #IFOPA
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FOP is an ultra-rare condition affecting around 70 people in the UK and 900 worldwide – however, doctors think there should be nearer to 7000 people. @FOPFriends supports those living with FOP and POH. #FOPFriends #CureFOP #IFOPA #RareDiseaseDay #RDD2023 #RareDisease
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Living with FOP can be unbearably painful, with the agony lasting days or longer. However, there can also be periods of calm. Living with uncertainty is just part of #FOP. No-one ever knows. This also has a significant impact on the emotional wellbeing of the person. @FOPFriends
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#FOP is rare but scientists believe research into FOP could benefit more common conditions such as osteoporosis and spontaneous heterotopic ossification from military blast injuries. We currently have 4 trials underway. We have HOPE. @FOPFriends #CureFOP #IFOPA #RareDiseaseday
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People living with #FOP look for ways to make things work & maintain their independence. It doesn't affect intelligence and they strive to find ways to make things work for them. They enjoy a wide range of hobbies from photography, gaming, & painting to gymnastics! #ThisGirlCan
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💙 We're lighting up the town hall tonight for #RareDiseaseDay and the 300 million people worldwide living with rare diseases. Oliver, pictured with @CatherineLHynes, lives with fibrodysplasia ossificans progressiva (FOP), a rare genetic disorder. Info: rarediseaseday.org
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Replying to @FOPFriends
@FOPFriends
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Replying to @RNOHMBDCentre
@RNOHMBDCentre team is now medical liaison team @RNOHnhs Our team is supporting clinical activities, but we haven't forgotten our patients or @FOPFriends Awareness Day. We working hard on regulatory submission for STOPFOP trial so we can resume the great work done by the team
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Happy FOP Awareness Day!! Share your #Funfeet4FOP pictures and help us to spread awareness of #fibrodysplasiaOssificansProgressiva #FopAustralia #fopfriends #curefop @fopfriends @cure_fop @ifopa #raredisease #supportcharity #rare #getonboard #fopawarenessday #love #support
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#funfeet4FOP in all sizes! Big, small and four legged. Share your pics and help us to raise awareness of Fibrodysplasia Ossificans Progressiva @ifopa @FOPFriends #fopawarenessday #charity #RareDisease #socks #dogs #support
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✨We are so happy to have raised fantastic total of £468.70 to help support the amazing work done by @FOPFriends✨ To find out why Laura nominated FOP Friends as last month's dress down day charity, click the link below. ow.ly/syR450yd9LQ #FOPFriends #ExpressSolicitors – at Manchester, England
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40 Days to go until Wayne & Brad take on the @Marathon_Mcr for @FOPFriends You can donate here uk.virginmoneygiving.com/fun… – at Urmston, England
Manchester Marathon@Marathon_Mcr25 Feb 2020
40 days to go.... #ManchesterMarathon
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OUR CHOSEN CHARITY 2020 As a business, we like to do our bit for the small community that we live and work in. We have chosen the brilliant charity @FOPFriends and will be taking part in a range of challenging activities during this year. See our blog the-windowco.co.uk/blog/char…
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✨Thank you to all staff that participated in January's dress down day. Your kind donations raised total of £468.70 for @FOPFriends✨ To find out why Laura nominated FOP Friends click the link below. ow.ly/syR450yd9LQ #FOPFriends #CureFOP #Support
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Tomorrow's January Dress Down Day charity was chosen by Laura from our Employer's Liability team. Click the link below to find out why she nominated @FOPFriends. ow.ly/azPM50y6GGu #FOPFriends #CureFOP #Support #DressDownFriday #ExpressSolicitors #Manchester
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Ellie Williams @thesgconline tests the activity of ALK2 mutated at phosphorylation sites, to investigate which of these play a role in #FOP, a rare and incurable genetic disease. #Openscience notebook: bit.ly/2S1o0We Blog: bit.ly/2r4vtIU @FOPFriends
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Year 7 student Oliver has been selling Christmas cards in school and sold out! He raised £61 for @FOPFriends who aim to raise funds that are needed to find effective treatments for the rare genetic condition Fibrodysplasia Ossificans Progressivaby. Well done Oliver!
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This week's IL newsletter - A new voice on Independent Living!; Vote Changing Places; Ambulance action update and more... @phandi #lifeisforliving #ChangingPlaces @closomatuk @FOPFriends @stephenfry bit.ly/33Wm5Vn
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