Patients and Families

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.  

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 discussion.