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Table 1 Online resources available for individuals with FOP

From: Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva (FOP): an international, multi-stakeholder perspective

Resources

Details

IFOPA [16]

 

 Medical care resources

Personalized medical brochure; medical information tracking resources; emergency medical cards

 Resources for those newly diagnosed

IFOPA Welcome Packet; FOP Connect: Peer Mentor Program

 Ability Toolbox Program

Designed to empower individuals with FOP by promoting independence through the use of tools and home adaptations

 Resilient Living Program

Provides education for strengthening the mind and spirit as every family works to overcome the challenges they face throughout their journey with FOP

 The Advocacy Series

Provides the tools for individuals to become more effective communicators and problem solvers in a variety of settings

 Educational videos, webinars and workshops available on YouTube channel

Including: ‘The Same but Different: A Look at Life with FOP’; FOP Facts and Insights; Oral Health and Anesthesia workshop; ‘FOP and COVID-19’

 Support guidebooks

‘What is FOP? A Guidebook for Families’; ‘What is FOP? Questions and Answers for the Children’

 Resources for children with FOP and their families

Including: Guidance for siblings; ‘Supporting your Child During a Stressful Procedure’; ‘Summer Family Activity Guide’; ‘FOP and School’; ‘Kids with FOP and Sports’; Fun Zone at FOP Family Gathering; tween/teen journaling workshop

 Meetings

FOP Family Gathering

 Clinical studies and trials guidance

Glossary of terms; current list of ongoing clinical studies and trials; videos and webinars such as ‘Development Journey for FOP: How Medicines Become Treatments’ and ‘Exploring Clinical Trials for FOP’

ICC [15]

 

 FOP Treatment Guidelines

Includes ‘Executive Summary of Key Practice Points’ [12]

 Clinical trial guidance

Current list of ongoing clinical trials; tips on how to prepare for clinical trials; publication on ‘Special considerations for clinical trials in fibrodysplasia ossificans progressiva (FOP)’ [47]

 COVID-19 guidance

Precautions for FOP Patients and Families [60]; Vaccine recommendations [61]

FOP Friends [17]

 

 Supporting a Child with FOP: a practical guide to their learning experience

Written by experienced teachers, to offer clear information and advice for how to best support a child with FOP and their family; serves as an ongoing guide providing useful age-appropriate insights and considerations as the child ages

  1. COVID-19: coronavirus disease; FOP: fibrodysplasia ossificans progressiva; ICC: International Clinical Council on FOP; IFOPA: International FOP Association