Inspiring FOP stories | Focus on FOP

Learn more about fibrodysplasia ossificans progressiva (FOP) through the inspiring stories and experiences of people living with FOP, as well as caregivers and healthcare professionals.

From experiencing traumatic falls in public, to navigating daily activities like eating and getting dressed; these stories of strength highlight the resilient spirit of people living with FOP.

These videos represent the independent views and experiences of FOP from patients, caregivers and healthcare providers and are not intended as medical advice. Please consult with your healthcare provider for any questions you have about your individual needs.

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FOP experiences

Experience firsthand what it’s like to navigate daily life while living with FOP. From simple tasks like eating and getting dressed to challenges such as maintaining balance and mobility, this immersive perspective helps deepen your understanding of their resilience and struggles.

Falling

Getting dressed

Eating

Standing up

FOP stories

Get to know Danie, Nadine, Erin, and Lori as they share their unique journeys of living with FOP. Their stories highlight the triumphs, challenges, and lessons they’ve learned, offering inspiration and insight into the human experience behind the condition.

Danie

Nadine

Erin and Lori

FOP caregiver experiences

Supporting a loved one or friend with FOP can be challenging. Dive into the videos below for practical advice and strategies to provide meaningful help, whether it’s through emotional support, understanding their needs, or helping with daily tasks.

Turning fear into action

My mother's circle of support

The power of a mother's love

FOP expert insights

Hear from leading experts about essential tips for managing life with FOP. From coping strategies to medical insights, their guidance empowers those affected and their caregivers to navigate this journey with confidence.

Signs and symptoms

Genetics and diagnosis

Disease progression

Misdiagnosis

Procedures to avoid

Flare-ups

Flare-up prevention

FOP science

Expand your knowledge of the mechanisms driving FOP. Learn how it impacts the body, the biological processes involved, and how this understanding can lead to better care and treatment options.

Mechanism of disease