*Please note, agenda sessions are listed in the local conference time zone, Central Standard Time (CST)
Friday, November 14
9 to 9:05 am Welcome and Opening
- Hope Newport, IFOPA
- Amanda Seeff-Charny, Executive Director of Patient Advocacy, Regeneron Pharmaceuticals
9:05 to 11 am FOP Treater Insights on Care Management and Questions from the Community
The Gut Microbiome and Gastrointestinal (GI) Symptoms and FOP Ed Hsiao, MD, PhD, University of California, San Francisco (UCSF)
Off-Label Use of Medications and FOP Mona Al Mukaddam, MD, MS, University of Pennsylvania
Dermatological and Dental Issues and FOP Clive Friedman, BDS, Certificate in Pedodontics, Diplomate, American Board of Pediatric Dentistry, Shulich School of Medicine and Dentistry Patricia Delai, MD, Hospital Israelita Albert Einstein
Questions and Answers Clive Friedman, BDS, Certificate in Pedodontics, Diplomate, American Board of Pediatric Dentistry, Shulich School of Medicine and Dentistry Ed Hsiao, MD, PhD, University of California, San Francisco (UCSF) Fred Kaplan, MD, University of Pennsylvania Mona Al Mukaddam, MD, MS, University of Pennsylvania Robert Pignolo, MD, PhD, Mayo Clinic
11:30 am to 12:30 pm FOP Community Panel featuring Community Members:
- Emma Albee
- Joe Hollywood
- Alexandra Rodriguez
- Trish Wheelock
Saturday, November 15
9:10 to 10:40 am: "Spinal and Chest Wall Challenges in FOP: Expert Medical and Surgical Insights"
- Fred Kaplan, MD, University of Pennsylvania
- Robert Pignolo, MD, PhD, Mayo Clinic
- Paul Sponseller, MD, Johns Hopkins School of Medicine
11:10 am to 12:00 pm: A Closer Look at the OPTIMA Trial Press Release
- Richard Keen, BS, PhD, FRCP, The Royal National Orthopaedic Hospital
- Michelle Davis, IFOPA
12 to 12:30 pm: Resilient as Always—Advocating for FOP Through Story
- Dean Wang, Undergraduate Student and Author, Harvard University
1:15 pm to 2:00 pm: Community Learnings and Identified Needs: Findings from the Health Insurance Literacy and Burden of Access Study
- Patti Engel, RN, BSN, Engage Health
- Hope Newport, IFOPA
