Resources | Details |
---|---|
IFOPA [16] | Â |
 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] | Â |
 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] | Â |
 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 |