Our 2025 Advocacy Series focused on all aspects of safety and FOP. We have created this handout highlighting the key takeaways from our conversations with community members and experts on this important topic.

The Advocacy Series helps people and families overcome barriers to receiving the support, access, care, and resources they need by learning from other FOP community members and discussing practical tools for better problem-solving across multiple areas of life with FOP. We offer a podcast, webinars, and community panels for each topic. You can access previous Advocacy Series topics here. 

Fibrodysplasia Ossificans Progressiva (FOP) Safety Checklist

Please note these are general safety guidelines only and do not replace specific recommendations from your own healthcare provider.

• Outside Your Home

  • Ensure pathways, porches, and doorways are well-lit
  • Consider installing motion-sensor or solar-powered lighting 
  • Asses you entry ways and thresholds to ensure barrier-free access
  • Consider installing a ramp or purchasing a portable ramp to reduce fall risk on stairs
  • Install handrails on any steps
  • Consider grab bars by doorways or thresholds

• Inside Your Home

  • Ensure hallways and living spaces are free of obstacles
  • Remove trip hazards like loose rugs, electronics cords, sharp furniture corners, and clutter
  • Install proper lighting in hallways, stairways, living spaces. 
  • Consider installing motion-sensor lighting, voice-activated lighting, or smart lighting controlled by a phone app

• Bathroom Considerations 

  • Remove loose rugs and install nonslip mats or nonslip tile 
  • Install grab bars near the toilet and shower. NEVER use a towel rack or toilet paper holder for support!
  • Consider a shower chair and a handheld showerhead to reduce fatigue when bathing 
  • Install a toilet riser if needed for mobility challenges 

• Home Emergency Preparedness 

  • Purchase a medical alert system, such as a call button or Apple Watch. Don't forget to practice!
  • Install a fire extinguisher in your home and clearly label the expiration date
  • Install smoke detectors and carbon monoxide detectors. Batteries generally should be changed once per year, and the entire unit should be replaced every 7-10 years. Consult your specific operating manual for device care and maintenance. 
  • Display emergency telephone numbers in an easy-to-find place and share this with your family or caregivers
  • Collect and display emergency medical information in an easy-to-find place and share this information with your family or caregivers. You can use forms such as the IFOPA Emergency Medical Information Card or Personalized Emergency Medical Form

• Natural Disaster and Evacuation Planning 

  • Know what disasters could affect your area. You should note which ones could call for an evacuation and when to shelter in place.
  • Find out where your local emergency shelter is located. Find out if your area has a specialized shelter for people with disabilities, and if so, does it require registering beforehand with your city or local EMS?
  • Talk to your doctor or pharmacist about how you can create an emergency supply of medicines.
  • Keep a list of your prescription medicines. Include information about your diagnosis, dosage, frequency, medical supply needs, and allergies.
  • Store extra nonprescription drugs, like pain and fever relievers, antihistamines, and antidiarrheal medicines
  • Have a cooler and chemical ice packs available to chill medicines that need to be refrigerated
  • If you use a power wheelchair, have a lightweight manual chair available as a backup, if possible, or an additional battery if another chair is not an option for you
  • Have pet food, extra water, a collar with ID tag, medical records, and other supplies for your service animal