Crandi

Pediatric Specific Resources Ifopa International Fop Association

Leo Migdal
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pediatric specific resources ifopa international fop association

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) continues to be a lifeline for families navigating this rare and complex condition. Their online library offers practical, patient-tested resources—covering everything from flare-up management to oral care tips—that help families feel more prepared for everyday challenges. In August, several Indian families benefited from IFOPA’s translated emergency care cards and home safety checklists. These tools ensured that parents could act quickly when new symptoms appeared and share accurate information with local doctors. FOP Trust India regularly connects newly diagnosed patients with IFOPA’s learning hub, allowing them to access credible, research-backed advice. For many, this bridge between global knowledge and local needs has reduced uncertainty and prevented harmful treatments.

By combining IFOPA’s global reach with the Trust’s on-ground network, families receive timely, tailored guidance—proving that knowledge is a form of care in itself. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/ This illustration was co-created with people living with FOP. According to the International Clinical Council (ICC) Guidelines, a multidisciplinary approach is essential to providing optimal patient care and lessening the chance for potentially harmful interventions.1 Regardless of the health consideration at hand, FOP will impact the types and ways in which care is given. Providers of all types and levels of experience should consult with an FOP expert when treating a patient with FOP.

The International FOP Association (IFOPA) and ICC websites feature critical medical information and guidelines on the management of FOP. The ICC is an independent group of FOP clinical experts made up of 21 internationally recognized physicians from 14 countries. A collection of guides, tools, and resources specifically, and independently, designed for clinicians and patients, with the goal of fostering improved outcomes in FOP. Infographics – Three informative pieces graphically highlighting the burden of FOP, treatment options, and shared decision-making. Received 2021 Aug 5; Accepted 2022 Feb 6; Collection date 2022. Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to...

The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from... To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, disabling genetic disorder characterized by congenital malformations of the great toes and progressive heterotopic ossification of soft and connective tissues. Assiduous attention to the unmet needs of this patient community is crucial to prevent potential iatrogenic harm and optimize care for individuals with FOP.

To gather international expert opinion and real-world experience on the key challenges for individuals with FOP and their families, highlight critical gaps in care, communication, and research, and provide recommendations for improvement. An international group of expert clinicians, patients and patient advocates, caregivers and representatives from the international FOP community participated in a virtual, half-day meeting on 22 March 2021 to discuss the key unmet needs... What is Fibrodysplasia Ossificans Progressiva (FOP)? FOP is one of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

For information on FOP please visit their web site at www.ifopa.org. The IFOPA is a 501c3 nonprofit organization that provides hope to individuals with FOP and their families through education and support programs while funding research to find a cure and raising awareness for the... The IFOPA was founded in 1988 by Jeannie Peeper who had never met anyone else with the disease. This isolation was typical before the IFOPA was formed, and Jeannie's goal was to bring people with FOP together. Today, the IFOPA is the umbrella organization for people with FOP worldwide and the place for FOP families to come for advocacy, education and support.

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The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from... To view a c...

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To gather international expert opinion and real-world experience on the key challenges for individuals with FOP and their families, highlight critical gaps in care, communication, and research, and provide recommendations for improvement. An international group of expert clinicians, patients and patient advocates, caregivers and representatives from the international FOP community participated in ...