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Carli and Erin, cross-country best friends, discuss how they’ve realized the importance of a strong support network of immediate family and friends, along with people who have a shared experience of living with FOP. Their connections have been key to nav...

Monia Vial, Senior Vice President, Franchise Head, Rare Disease Business Unit at Ipsen reflects on a conversation with Courageous Parents Network to educate Ipsen colleagues about shared decision-making and potential positive impacts when we better underst...

L. Marie started her career more than 20 years ago helping others access community health programs and healthcare—a skillset she never imagined would eventually be put to use advocating for her own health after being dismissed by her doctors.  ...

Dr. Amauri Soares, VP Head of Early Development & Innovation Oncology at Ipsen usesmusic to explain the importance of understanding the genetics of cancer and how the emerging field ofepigenetics could unlock a new paradigm for precision medicine....

Savannah – or Sassy Savvy as she’s known by her family – is a caring sister, a strong-willed daughter and above all else, overfilling with creativity, happiness and laughter. Savannah is also living with a rare disease, fibrodysplasia ossificans prog...

Sabrina is a lover of nature, mother and grandmother, whose outlook on life is to make every moment count. Sabrina lives with primary biliary cholangitis (PBC), which means every day is different depending on the severity of her symptoms, but this doesn’...

This year marks the 17th anniversary since the discovery of the ACVR1 gene was announced, a major scientific milestone in fibrodysplasia ossificans progressiva (FOP) research that helped us understand what causes the condition. On April 23, ...

I was honored to be invited to take on the challenge to live ‘A Life in a Day of a patient with FOP’ – but also apprehensive. The challenge simulated a day spent living as someone who has fibrodysplasia ossificans progressiva (FOP). FOP is a debilita...