Family Blogs and Websites

Patients and Families

Family Blogs and Websites

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.

A Little Bit of Life
A blog from Zoe featuring a little home, a little life, and a little fashion.

FOP Ashley's Cure
Read about Ashley's bravery as a child living with FOP. 

Friends with FOP
A blog created by moms Suzanne McCloskey and Karen Munro following the lives of Erin Kate and Miranda, two children with FOP.

Hayden's Hope
Read about Hayden and his family's efforts dedicated to raising awareness and research funds for FOP.

Hope for Sona
Learn more about Sona's hopeful life as a child with FOP.

Joshua's Future of Promises
Joshua and his family share updates and information about their life with FOP.

One Rare Boy
Follow the journey of Eli, a young boy diagnosed with FOP in 2016, as he and his parents work to raise awareness and funds to fight 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.

Touch Medusa
Akihiro Shino created a website in Japanese called "Touch Medusa!" which contains a diary and shows his life with FOP with lots of pictures on his website.

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