Patients and Families

As you or your child with FOP transitions into early adulthood, there is a need for specific advice about the new challenges of adulthood and independence. We hope that the resources below can be used to support children and families as they educate others about their diagnosis and advocate for their needs.    

Exploring the Future 

• Explore the Advocacy Series "College, Careers and Pursuing a Vocation" unit to learn how others living with FOP have navigated their career path, what led them to their current profession, the obstacles they have faced, adaptations they've found helpful and more.  
• Learn about Financial Planning and Government Benefits (in the United States).
• Explore the Adaptive Driving Resources page to learn how others living with FOP have made adaptations to their vehicles, obtained professional driving assessments, and worked with vocational rehabilitation services to support their driving journey. 
• Learn more about individuals with FOP who have partnered with service animals. 

Nutrition Support  

• Recipes for Limited Jaw Mobility:  Learn about different ways to support your diet with limited jaw mobility and check out FOP-specific cookbooks: Just Whip It & Livro De Receitas

Community Connection

• Peer Support Group: The IFOPA's Peer Support Group for English-speaking adults with FOP is an opportunity for community members to meet monthly for a 60-minute session moderated by counseling psychologist Dr. Al Freedman, dad of a son who lived for 26 years with another rare disease. The group provides opportunities for connection between community members by creating a safe space for socializing and sharing challenges related to life with FOP. The group moderator, Dr. Freedman, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.
• Meet other patients in our Facebook/Online Support Groups and tap into the vast resources within the community.  

Working with a Caregiver

• Read our blog post, Building Supportive Partnerships: Working with Paid Caregivers, to hear from FOP community member Trichele Reece as we explore why this connection is so important and how both caregivers and those they support can nurture a healthy, balanced, and safe relationship. 
• Professional Conversation with Illene from @caregiverchronicalspnw - Listen in as IFOPA Family Services Coordinator, Melissa Davis, discusses the ins and outs of hiring and working with paid caregivers with Illene, a professional caregiver and caregiver trainer who runs the Instagram account @caregiverchronicalspnw
• Choosing a Caregiver - FOP'er Nancy Sando created a guide to hiring and managing the personal care attendants that may be an important part of a person's team when living independently.