From January to July 2025, FOP Trust India has made remarkable strides in its mission to support families living with Fibrodysplasia Ossificans Progressiva (FOP). Here’s how their work is transforming lives across India: Medical Support: Over 100 patient consultations were coordinated, with many families receiving emergency guidance during flare-ups. Consultation fees, medications, and even genetic […]
Patient Story: Sanskriti’s Strength – A Young Voice of Hope from Uttar Pradesh In a quiet town in Uttar Pradesh, 10-year-old Sanskriti Gupta is facing one of the world’s rarest diseases with quiet strength and a brave heart. Diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), Sanskriti’s life changed in ways her family could never have imagined. […]
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. […]
The International FOP Association (IFOPA) offers global support to FOP families by creating strong networks that transcend borders. From its roots in the United States, IFOPA has grown into a lifeline for families in over 60 countries, offering hope, education, and vital resources for those affected by Fibrodysplasia Ossificans Progressiva (FOP). IFOPA’s role in this […]
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. […]
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 […]
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 […]
Day One: Compassion in Action (June 9, 2025) The week began with patient check-ins. Ms. Asha Shetty was healing from jaw pain after using a gel prescribed by Dr. Rajesh. Samed Ali had recovered from a fever. Lashmamma, who completed a course of antibiotics, reported less gum pain. Meanwhile, Pranav, a recent surgery patient, was […]
A Brave Heart from Chengannur In the quiet town of Chengannur in Kerala’s Alappuzha District lives 10-year-old Devanda. She shows incredible courage while facing Fibrodysplasia Ossificans Progressiva (FOP), a rare and challenging genetic condition. Her story highlights the power of early diagnosis, strong community support, and her family’s unwavering care. Diagnosis That Changed Her Life […]
Fibrodysplasia Ossificans Progressiva (FOP) remains one of the most misunderstood rare diseases. With only about 900 confirmed cases worldwide, public and even professional awareness is still alarmingly low. Misconceptions persist, leading to delays in diagnosis and sometimes irreversible harm. One common myth is that FOP is a form of arthritis or a post-injury complication. In […]
