Videos: FOP Facts and Insights

This 16-part video series offers an abundance of information and advice for people with FOP and their family members, physicians and caregivers. The videos themselves include information by Frederick Kaplan, M.D. and Dr. Eileen Shore, Ph.D. of the University of Pennsylvania School of Medicine, as well as IFOPA member Lori Henrotay, who helped produce the videos for the organization. (Note: The videos are hosted on YouTube.)

To view the entire series, please click through the title listing below. To view other IFOPA- and FOP-related videos, please visit our YouTube channel.

FOP Facts & Insights: A Video Series

  1. FOP Facts & Insights: Series Overview
  2. FOP Facts & Insights: What is FOP?
  3. FOP Facts & Insights: Clinical Features
  4. FOP Facts & Insights: FOP Misdiagnosis: Issues and Consequences
  5. FOP Facts & Insights: Treatment Guidelines and Considerations
  6. FOP Facts & Insights: Pain Management
  7. FOP Facts & Insights: Special Medical Considerations
  8. FOP Facts & Insights: FOP Gene Discovery
  9. FOP Facts & Insights: The FOP Research Lab
  10. FOP Facts & Insights: Collaborative Research
  11. FOP Facts & Insights: Pregnancy
  12. FOP Facts & Insights: Anesthesia
  13. FOP Facts & Insights: Hearing Impairment
  14. FOP Facts & Insights: Piercings
  15. FOP Facts & Insights: Preventative Oral Hygiene

IFOPA VIDEO LIBRARY: An Exclusive Member Benefit

The IFOPA is thankful to Dr. Zasloff for providing our first Video Library item - RARE Documentary. This one-hour video tells the true story of a clinical trial to test a drug for the rare disease Hermansky-Pudlak Syndrome which causes albinism, blindness, a bleeding disorder and often fatal pulmonary fibrosis. RARE can be borrowed for 2 weeks to learn about the HPS community's clinical trial experience from the perspective of a mother, daughter, doctor and others.

To view trailer cilick RARE

To borrow RARE complete the Video Library Request Form for your area by clicking on a link below. If you don't see a request link for your global area please contact the IFOPA office.

USA IFOPA Member Video Request

United Kingdom IFOPA Member Video Request