Palovarotene for FOP Receives Negative CHMP Opinion
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Palovarotene for FOP Receives Negative CHMP Opinion

A positive opinion is needed from the Committee for Medicinal Products for Human Use (CHMP), part of the European Medicines Agency (EMA), to begin marketing a drug. Once a positive…

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Ipsen Pushes for FDA Approval of Palovarotene for FOP
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Ipsen Pushes for FDA Approval of Palovarotene for FOP

In 2022, the U.S. Food and Drug Administration (FDA) examined the potential of approving palovarotene, a selective RARγ agonist, for the treatment of fibrodysplasia ossificans progressiva (FOP). However, the FDA…

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Rare Disease Patients in Bangladesh Struggle with Diagnosis and Treatment
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Rare Disease Patients in Bangladesh Struggle with Diagnosis and Treatment

Mazidul Islam told the Daily Star that he had to watch his 14-year-old son Farid die and could do nothing to save him. Among other things, he regrets the fact…

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Fibrodysplasia Ossificans Progressiva: A Rare Disease That Turns The Body Into Bone

  Fibrodysplasia ossificans progressiva (FOP) begins with very little warning. When children are born with FOP, they appear normal aside from a possibly characteristic malformation of the largest toe that…

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International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness
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International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness

International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day is recognized each year on April 23rd. This is a time for spreading awareness about this rare disorder among both the general public…

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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 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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Fibrodysplasia Ossificans Progressiva Patient Files Lawsuit against County DDS
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Fibrodysplasia Ossificans Progressiva Patient Files Lawsuit against County DDS

According to an article originally from WCPO Cincinnati, a woman with fibrodysplasia ossificans progressiva is filing a lawsuit against officials of Ohio's Hamilton County. Jessica Scully, 57, alleges that the…

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