In Pursuit of a Cure: Sienna’s Story

💚 FOP (Fibrodysplasia Ossificans Progressiva) is an ultra-rare disease that turns muscle into bone, obstructing movement and hindering lives: https://ifopa.org/what_is_fop

🌎 The International FOP Association (IFOPA) is here to help find a cure through funding research, raising awareness, and supporting the community: https://ifopa.org/about_ifopa

👋🏽 CONNECT:
https://fb.com/IFOPA
  / cure_fop  
  / ifopa  
  / international-fop-association  

📬 Sign up for the newsletter and stay on top of the community and the path towards a cure: https://ifopa.org/connect

👨‍👩‍👧‍👦 Register for the next Family Gathering: https://ifopa.org/familygathering. Relive sessions from past Gatherings: https://ifopa.org/family_gathering

🛠️ Check out the Ability Toolbox Guidebook featuring tools and home adaptations for independent living: https://guidebook.ifopa.org

📆 Get involved with our family services, fundraising and awareness events: https://ifopa.org/calendar_of_events

📗 Learn the scientific terminology surrounding FOP in the IFOPA Glossary: https://ifopa.org/glossary

❤️ DONATE and join us to fight FOP and support families in their journey: https://ifopa.org/donate

🙋🏽 FOP Frequently Asked Questions: https://ifopa.org/fop_faq

#cureFOP #RareDisease #disability #RAREParenting #caregiver