Stories

Hub experienced a hemorrhagic stroke in 2021 as a result of bleeding in the brain. Like many stroke survivors, Hub experiences spasticity, a condition in which muscles contract uncontrollably leading to pain, stiffness and limited movement. As a father of…

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 progressiva…

Nora and her husband, Hector, met 39 years ago, got married shortly after, and have been inseparable ever since. In 2021, Hector was diagnosed with metastatic pancreatic cancer, which threw their entire family into navigating a very difficult diagnosis. Nora…

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 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, we marked FOP Awareness Day to honor…

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…

Hear what CEO David Loew has to say about the official close of its acquisition of Epizyme.

Today, we are broadening our commitment to providing everyone with the opportunity to read and understand our research. From July 2022, we will publish, as a minimum, a 250-word plain language summary alongside all company-sponsored journal publications from human studies.