All posts tagged: Fibrodysplasia Ossificans Progressiva

IFOPA Community Spotlight: Empowering Through Global Collaboration

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. […]

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Building Support, One Step at a Time: A Week of FOP Care and Coordination

Over the past week, FOP Trust India continued its tireless efforts to ensure that every family affected by Fibrodysplasia Ossificans Progressiva (FOP) receives timely, expert care and the emotional support they need. From hospital visits to remote consultations, each day brought a mix of challenges, coordination, and hopeful outcomes. Hospital Collaboration in Chennai The week […]

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Oral Health in FOP: A Vital Yet Overlooked Part of Care

When thinking about FOP treatment, most people focus on flare-ups and bone growth. But oral health is just as important—especially since jaw stiffness and difficulty opening the mouth are common complications in patients with FOP. Routine dental procedures like extractions or deep cleanings can trigger flare-ups if not done carefully. That’s why patients must work […]

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Quiet Courage – Stories of Strength from Sivaji, Khushi, and a Search for Mokshith

Every journey with Fibrodysplasia Ossificans Progressiva (FOP) is filled with quiet moments of courage—whether it’s a child leading her classroom, a family contributing despite hardship, or the community helping track down a lost contact. In July 2025, the FOP Trust India team encountered three such stories that reflect resilience, kindness, and deep commitment to care. […]

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Understanding the Signs: Early Clues That May Point to FOP

For a rare disease like Fibrodysplasia Ossificans Progressiva (FOP), early recognition can mean the difference between careful management and avoidable harm. Because FOP is so rare—affecting roughly 1 in 2 million people—most general practitioners and pediatricians may never encounter a case during their careers. That’s why educating families and frontline health workers about the early […]

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What IFOPA Isn’t: Clearing Up the Confusion to Create Better Care

Despite growing global awareness, many people still misunderstand what the International FOP Association (IFOPA) does—and what it doesn’t. IFOPA is not a medical clinic, not a research lab, and not a government agency. Instead, it plays an essential role as an international connector, educator, and advocate for people living with Fibrodysplasia Ossificans Progressiva (FOP). What […]

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Reaching the Unreachable: How FOP Trust India Is Meeting Patients Where They Are

From the hills of Andhra Pradesh to the city streets of Bangalore, June 2025 revealed the steady commitment of FOP Trust India to provide care, connection, and compassion to those affected by Fibrodysplasia Ossificans Progressiva (FOP). This month’s patient engagement stories highlight how consistent outreach, education, and financial support make a tangible difference—especially for families […]

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IFOPA’s Digital Tools: Making Rare Disease Support More Accessible

In an increasingly digital world, IFOPA has adapted to meet the needs of the global FOP community by building accessible, technology-driven support tools. Through virtual education programs, translation services, and digital health guides, IFOPA empowers families and professionals to better understand and manage FOP, no matter where they live. One of its most useful digital […]

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Frontline Stories: Supporting FOP Patients Across India

Every week, families affected by Fibrodysplasia Ossificans Progressiva (FOP) reach out seeking answers, reassurance, and support. Behind every name is a journey of courage, uncertainty, and a desire for better care. This week’s updates reflect how consistent medical support, awareness, and timely intervention can make a significant difference in the lives of those living with […]

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