Patients and Families

The IFOPA values supporting families at all stages of their journey with FOP. We hope that the resources below can be used to support people with FOP and families as they educate others about their diagnosis and advocate for their needs. 

Patient Programs 

• The Ability Toolbox Program is designed to empower individuals with FOP by promoting independence through the use of tools and home adaptations. 
  
  
• The Resilient Living Program provides education for strengthening the mind and spirit as every family works to overcome the challenges they face throughout their journey with FOP. 
  
  
• The Harold and Elaine Kaplan Quality of L.I.F.E. (Living Independently with Full Equality) Awards are scholarships granted to patients with FOP. The program is designed to promote health, welfare and independence.  
  
  
• Take part in The Advocacy Series to explore ways to become a more effective communicator and problem solver to get your needs met in a variety of settings.

Support for the Family 

• Explore our Sibling-Specific Resourcesfor the brother and sister of your child with FOP and explore some of the incredible work other organizations are doing to support siblings.
  
  
• Sign up for our Caregiver Support Group for parents and significant others of individuals living with FOP. This group is facilitated by a professional counseling psychologist and designed to provide the opportunity to allow caregivers to provide support to others on their journey with FOP.
  
• Meet other patients in our Facebook/Online Support Groups and tap into the vast resources within the community.  

Financial Planning

• Begin planning the financial health for yourself or your loved one with FOP by exploring special needs financial planning and ABLE accounts (applicable for US families only)
• Learn about Financial Planning and Government Benefits (applicable for US families only)