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…
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…
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…
Fibrodysplasia ossificans progressiva (FOP) brings a serious meaning to a commonly-used phrase: ‘My big toe.’ According to a recent article in the Orphanet Journal of Rare Diseases, FOP is an…
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…
Researchers from the Perelman School of Medicine at the University of Pennsylvania recently explored the underlying biological cause and mechanisms behind fibrodysplasia ossificans progressiva (FOP). In the past, researchers from…
For years, there have been few – or no – therapeutic options in Canada for those with fibrodysplasia ossificans progressiva (FOP), a rare genetic connective tissue disorder. However, this has…
About five months ago, Lexi Robins was born in the United Kingdom. She didn't show any signs of abnormal development at first, besides the fact that her thumb didn't move…
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…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
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…
This year, the entire Patient Worthy team traveled up to Washington, DC for Rare Disease Week 2020. This event is always a big one for the rare disease patient community.…
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…
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…
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…
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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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…
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…
Today is International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day! We at Patient Worthy understand that a lot of these diseases you may not have heard of - which is exactly why awareness…
Cancer may have been called the Emperor of all Maladies but FOP-Fibrodysplasia Ossificans Progressiva is certainly the King. We place it lower only because it affects so few; one in every…
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