April 23 is International FOP Awareness Day: Spreading Rare Disease Awareness
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April 23 is International FOP Awareness Day: Spreading Rare Disease Awareness

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is gearing up to recognize International FOP Awareness Day this year on April 23, 2021. The event is meant to help spread awareness…

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Garetosmab Dosing Paused in LUMINA-1 Trial for FOP
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Garetosmab Dosing Paused in LUMINA-1 Trial for FOP

While clinical trials can be extremely helpful in the development of new treatments, not all trials go as planned. Recently, biotechnology company Regeneron Pharmaceuticals ("Regeneron") discovered this firsthand. As the…

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ICYMI: Company Announces Halt of Fibrodysplasia Ossificans Progressiva Clinical Development Program
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ICYMI: Company Announces Halt of Fibrodysplasia Ossificans Progressiva Clinical Development Program

According to a story from newswiretoday.com, the biopharmaceutical group Ipsen has recently announced its decision to halt its dosing of patients in its phase 3 clinical trial and its phase…

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One Fibrodysplasia Ossificans Progressiva Trial is on Hold but Another has Shown Promise
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One Fibrodysplasia Ossificans Progressiva Trial is on Hold but Another has Shown Promise

Ipsen is a pharmaceutical company based out of Paris. Sadly, they have just announced that they have pressed pause on not one but two studies for fibrodysplasia ossificans progressiva (FOP). FOP…

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FDA Listening Session: Fibrodysplasia Ossificans Progressiva

On May 29th, 2019, the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) alongside other members of the fibrodysplasia ossificans progressiva community, sat down for an hour long 'listening session' with representatives…

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New Drug Has Promise for Treating Diffuse Intrinsic Pontine Glioma and Fibrodysplasia Ossificans Progressiva

Diffuse Intrinsic Pontine Glioma Diffuse intrinsic pontine glioma (DIPG) is a rare form of childhood brain cancer that has a 100% mortality rate. Children diagnosed with DIPG only typically live…

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An International Organization Dedicated to  Finding a Cure for Fibrodysplasia Ossificans Progressiva (FOP) Began with a Group of Eleven Concerned Pen Pals

Three cases of fibrodysplasia ossificans progressiva (FOP) a rare genetic disease, were reported recently in Stat’s health issue. Wendy’s Story Wendy Weldon was a brave little nine years old when she…

Continue Reading An International Organization Dedicated to  Finding a Cure for Fibrodysplasia Ossificans Progressiva (FOP) Began with a Group of Eleven Concerned Pen Pals

New Resources Could Improve Drug Development for Fibrodysplasia Ossificans Progressiva

Ipsen has just announced that they will be acquiring Clementia Pharmaceuticals. This merging of companies is exciting for the rare community because it will strengthen the resources, knowledge-base, and overall…

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