Tag: Rare disease

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 (FOP), and while it has a great impact on her life, she nor her family let it define her.

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’t stop her from doing the things she loves the most.

This year marks the 17th anniversary since the discovery of the ACVR1 gene was announced, a major scientific milestone in fibrodysplasia ossificans progressiva

I was honored to be invited to take on the challenge to live ‘A Life in a Day of a