FOP Resource Videos

Patients and Families

FOP Resource Videos

The YouTube channel FOPNews is where we publish all IFOPA and FOP videos. Please visit FOPNews to view all videos.

FOP Science Made Simple

Obtaining Support and Ongoing Care for Children and Adults with FOP

This seven-part series was produced by MedLive in partnership with the IFOPA, the National Organization for Rare Disorders (NORD), and the Rare Bone Disease Alliance. Each module is approximately 30 minutes long and is available to watch at any time on demand.

Module 1 - "We Were Told It Could Be FOP: Now What?”

Hear about the genetics and presentation of FOP from specialists in FOP clinical care, social workers, patient representatives, and individuals with FOP and their caregivers. The expert panel tells where to locate FOP specialists and find support.

Module 2 - “Managing and Anticipating Flare-Ups”

The expert panel shares advice on management of flare-ups, medications, and injury prevention. They will share strategies for partnering and communicating with your multi-disciplinary care team, including your specialty care providers, primary care provider, and dentist.

Module 3 - “Communicating Your Needs to Your FOP Healthcare Team"

The expert panel gives actionable practical tips about making general health decisions. They also talk about specific health areas including immunizations, surgery, orthodontal care, and hearing care.

Module 4 -“Ongoing Care for People with FOP and Their Families: Nutrition, Occupational, and Respiratory Care” 

The expert panel discusses several ways people with FOP can stay active and eat, function, and breathe better. Learn how occupational and physical therapists can suggest strategies and assistive devices to help maintain daily activity.

Module 5 – “From Childhood to Adulthood with FOP”

The expert panel explores what can be done to ease the transition from childhood to adulthood for people living with FOP.  Strategies for dealing with school, getting the right assistive devices and more are shared.

Module 6 - “Shared Stories of FOP Families”

Hear from other families about best practices and strategies to live with FOP including psychosocial therapy, infection prevention, and addressing needs of other family members and caregivers.

Module 7 - "FOP: Your Burning Questions Answered"

Join us for a special “Frequently Asked Questions Spotlight” exploring pressing questions and concerns from persons living with FOP.

This activity is supported by an independent medical education grant from Regeneron Pharmaceuticals, Inc.

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