Patients and Families
If you would like your blog or website to be added to the list, please contact us with the URL and a short description of the blog or website.
Please note: Everyone's experience with FOP is different. These websites represent individual families' interpretations of medical situations and events. These sites are not intended to provide medical advice.
Hayden's Hope
Read about Hayden and his family's efforts dedicated to raising awareness and research funds for FOP.
Joshua's Future of Promises
Joshua and his family share updates and information about their life with FOP.
One Spirit, Two Skeletons
Jasmin talks about navigating life as a young adult with FOP.
Raina Shines
Read about the adventures of Raina and her family as they navigate Raina's FOP journey.
Rare Mom
Read about Sienna and her family as they celebrate the happiness, sadness and hope of life with FOP.
Marie, leader of FOP Sverige, has created a unique photo album that follows her son Hugo's FOP from newborn to adult.
