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Most people with FOP are born with a tell-tale sign of the disease - two bent big toes - so children should be able to be diagnosed at birth. Work is underway to increase awareness of FOP among health care professionals, especially pediatric providers. #cureFOP #RareDiseaseDay

Rare disease research is critical to saving lives and giving families more time together. #cureFOP #RareDiseaseDay

Flare-ups are not only painful, they take an emotional toll on both the person living with FOP and their family. You don't know if the flare-up will disappear or will leave new bone growth or a permanent loss of mobility. #cureFOP #RareDisease

It's Global FOP Awareness Day - a perfect day to “show off” & show how you're raising FOP awareness. Post photos wearing FOP awareness shirts, hats, beanies, bracelets…or showing off your #cureFOP license plate frames, mugs & blankets. Don’t forget to add #cureFOP when you post

We are thrilled to share the RARE BONE edition of RARE Revolution Magazine - FOP is featured in 9 articles. Thank you to @IpsenGroup for serving as the editorial sponsor of this edition - lnkd.in/d6QpPda. 1/2

The recent passing of several members of our FOP family has highlighted the pain and hurt we all feel in our hearts. We are hosting a virtual support meeting for community members to come together in their shared sense of loss and grief. Learn more at ifopa.org/honoring_the_f…

In this quarter's topic we're looking at how advocacy begins by empowering children to overcome challenges rather than enabling them to rely on others. Learn how children, teens and young adults can start advocating for their needs at different developmental stages. 2/2

What should you do if FOP is confirmed? This video module explains the current best practices for managing patients with FOP and the treatment options available.

What should you do if FOP is suspected? This video module provides practical advice on when to suspect and how to diagnose FOP. Learn more about the most appropriate investigations to confirm a case and also those to avoid if FOP is suspected.

Try the Raise-A-Leg challenge! Here’s how it’s done: Push the whole side of your body against a wall and then lift the opposite leg! It’s not as easy as it looks! #fopchallenge #raisealegforfop #helpusfindthemissing #tinsoldiersfoppatientsearch #raredisease #CareAboutRARE

Meet AJ. He has a rare condition called FOP. Every 44 hours, somewhere in the world, another baby with FOP is born. Help us find them! #fopchallenge #raisealegforfop #helpusfindthemissing #tinsoldiersfoppatientsearch #raredisease #CareAboutRARE

Join the challenge. Save a life! #fopchallenge #raisealegforfop #helpusfindthemissing #tinsoldiersfoppatientsearch #raredisease #CareAboutRARE #patiensecurity #rarelife #fopdiagnosis #sealsighthealth #curefop #challengeyourself #challengeaccepted #raredisease

We need YOU to help us find the missing FOP warriors! JOIN THE CHALLENGE! #fopchallenge #raisealegforfop #helpusfindthemissing #tinsoldiersfoppatientsearch #raredisease #CareAboutRARE

Malformed big toes + Lumps + Stiffness = FOP. Help us FIND the missing! #fopchallenge #raisealegforfop #helpusfindthemissing #tinsoldiersfoppatientsearch #raredisease #CareAboutRARE

In #FibrodyplasiaOssificansProgressiva (#FOP), soft tissues slowly turn to bone. Our STOPFOP project is trialling cancer drug #saracatinib as a treatment for this #RareDisease Read more in today's #IMISummerReading: bit.ly/2NAoIcN #IMICarryTheTorch #cureFOP

We can save a child from being locked into a world of immobility. Help us find them before their symptoms worsen. Raise a leg! #fopchallenge #raisealegforfop #helpusfindthemissing #tinsoldiersfoppatientsearch #raredisease #CareAboutRARE #rarewarriors

Fibrodysplasia Ossificans Progressiva: Two Ipsen Clinical Trials Just Released on ClinicalTrials.gov: PIVOINE Study (palovarotene) and FALKON TRIAL (IPN60130; Phase 2, Two-part, Placebo-controlled, Parallel-group, Double-blind Study) bit.ly/2XReb2A

It's officially Rare Disease Awareness Month and the countdown to #RareDiseaseDay 2022!⏰ Watch now to learn more about what our global movement is all about!

CFOPN is making a CALL OUT to all Canadians with FOP and/or their parents/caregivers to support our Patient Evidence Submission to decision makers who will be making funding recommendations on the first FOP therapy available in Canada.

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