The IFOPA will now offer a peer support group for English-speaking adults 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 FOP. The group moderator will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.
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Meetings will take place on the first or second Tuesday of every month at 12 pm ET. (9 am PT/10 am MT/11 am CT/12 pm ET/5 pm GMT/6 pm CET) Upcoming Meeting Dates:
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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.
