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Rare Disease Community Conversation Ifopa International

Leo Migdal
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rare disease community conversation ifopa international

⏰ Join us TOMORROW, February 28, at 2 PM ET and tune in to our 🎥 Facebook Live event, A Conversation on Rare Disease, in recognition of #RareDiseaseDay 🧬 We’re bringing together two incredible... Neena Nizar – Executive Director of The Jansen’s Foundation, Patient and mom to two superheroes 🦸 with Jansen’s Metaphyseal Chondrodysplasia 🎤 Laura Romano – Young Adult Rare Representatives (YARR) Program Manager at EveryLife Foundation... Siblings Laura and Mark Rossano join IFOPA Family Services Manager Hope Newport for an open and insightful discussion on navigating sibling relationships when one sibling is living with FOP. In this special episode, Hope from the International FOP Association (IFOPA) and Neena from the Jansen’s Foundation come together to spotlight the power of connection within the rare disease and rare bone disease communities. They discuss how collaboration across organizations like the Rare Bone Disease Alliance and... In this podcast episode for the 2025 Advocacy Series, IFOPA Family Services Coordinator, Melissa Davis, speaks with FOP Community Member Kathy Ford and Rare Disease advocate Kerri Engbrecht on the importance of connecting with...

IFOPA Executive Director Michelle Davis recently chatted with FOP Community Member Erin Danzer. Erin is a member of the EveryLife Foundation's YARR (Young Adult Rare Representatives) Program and in February, Erin & Michelle attended the EveryLife Foundation's Rare Disease Week on Capitol Hill. While that experience... In this episode of the 2024 Advocacy Series, IFOPA Family Services Manager, Hope Newport speaks with 12-year-old Maria and her mom Felicia Wray about navigating support systems in school, social and the healthcare setting. Maria shares specific experiences of her journey growing as an advocate while Felicia provides... We transform our science to make a meaningful difference to the lives of people living with rare diseases.

We collaborate with the rare disease patient community to gather evidence and quality-of-life data that ensures our scientific discoveries, clinical studies and support solutions accurately address their needs. One example of this is our collaboration with the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) and 14 national fibrodysplasia ossificans progressiva (FOP) patient organizations to co-create the first ever survey investigating the true impact... We work together with the rare disease patient community around the world on a range of different projects, across all stages from research and development, clinical study information, and patient support programs. We collaborated with PBCers in the USA, the Canadian PBC foundation, and the UK PBC foundation, on a co-created symposium at the American Association for the Study of Liver Diseases (AASLD), entitled ‘Living with... The symposium raised awareness of the unique needs of people living with PBC among healthcare professionals, emphasizing the importance of looking ‘beyond the chart’ to understand the needs of people living with PBC and... 1520 Clay St, Ste H2, North Kansas City, MO 64116North Kansas City, Missouri, United States

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva and their families by instilling hope worldwide while searching for... Their mission is to eliminate FOP as a health concern through education, research, advocacy, and support. Fibrodysplasia ossificans progressiva (FOP) is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as... The International FOP Association (IFOPA) continues to be a vital hub for individuals and families living with Fibrodysplasia Ossificans Progressiva (FOP). As a worldwide nonprofit, its mission focuses on empowering patients through education, research, and direct support. This week, we spotlight how IFOPA builds bridges between continents and clinics to serve the FOP community better.

One of IFOPA’s standout features is the FOP Registry—a global tool collecting clinical and patient-reported data that aids in research and treatment development. In addition, IFOPA’s International President’s Council ensures that country-specific voices are heard and included in every effort. Families from India, Brazil, South Africa, and beyond have found solidarity through IFOPA’s peer connect program, emergency medical guidelines, and caregiver resources. These tools, translated into multiple languages, are removing barriers and offering critical lifelines. Thanks to IFOPA’s commitment, a child diagnosed in a remote village has the same access to information and resources as someone in a large urban hospital. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/

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⏰ Join Us TOMORROW, February 28, At 2 PM ET

⏰ Join us TOMORROW, February 28, at 2 PM ET and tune in to our 🎥 Facebook Live event, A Conversation on Rare Disease, in recognition of #RareDiseaseDay 🧬 We’re bringing together two incredible... Neena Nizar – Executive Director of The Jansen’s Foundation, Patient and mom to two superheroes 🦸 with Jansen’s Metaphyseal Chondrodysplasia 🎤 Laura Romano – Young Adult Rare Representatives (YARR) Pr...

IFOPA Executive Director Michelle Davis Recently Chatted With FOP Community

IFOPA Executive Director Michelle Davis recently chatted with FOP Community Member Erin Danzer. Erin is a member of the EveryLife Foundation's YARR (Young Adult Rare Representatives) Program and in February, Erin & Michelle attended the EveryLife Foundation's Rare Disease Week on Capitol Hill. While that experience... In this episode of the 2024 Advocacy Series, IFOPA Family Services Manager, Hope...

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We collaborate with the rare disease patient community to gather evidence and quality-of-life data that ensures our scientific discoveries, clinical studies and support solutions accurately address their needs. One example of this is our collaboration with the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) and 14 national fibrodysplasia ossificans progressiva (FOP) patient...

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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva and their families by instilling hope worldwide while searching for... Their mission is to eliminate FOP as a health concern through education, research, advocacy, and support. Fibrodysp...

One Of IFOPA’s Standout Features Is The FOP Registry—a Global

One of IFOPA’s standout features is the FOP Registry—a global tool collecting clinical and patient-reported data that aids in research and treatment development. In addition, IFOPA’s International President’s Council ensures that country-specific voices are heard and included in every effort. Families from India, Brazil, South Africa, and beyond have found solidarity through IFOPA’s peer connect p...