The IFOPA offers a caregiver support group for English-speaking parents and spouses of individuals living with FOP. The group is an opportunity for members of the community to meet monthly for a one-hour session which will be moderated by counseling psychologist Al Freedman, dad of a son who lived for 26 years with another rare disease. The group will provide opportunities for connection between community members by creating a safe space for socializing and sharing challenges related to life with a loved one who has FOP. The group moderator will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.

Email Hope Newport, Family Services Manager at [email protected] to learn more about upcoming meetings and registration!

Meet Our Moderator

Albert Freedman, PhD, is a child, adolescent and family psychologist in independent practice. Al provides counseling support for families affected by rare disease and complex medical conditions, and serves as a consultant to rare disease advocacy groups, biopharmaceutical companies, and health care organizations. Al writes and speaks nationally and globally on the topic of the emotional experience of families affected by rare diseases and complex medical conditions. Al's son, Jack, lived with Spinal Muscular Atrophy for 26 years.