Category: Rare Disease
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By the Phoenix Warrior A Mother’s First Glimpse: Christina’s Story When Christina’s son Alex entered the world, instead of joyful first cuddles, she faced a nightmare: her newborn lacked skin on his hands and feet. Within days, his condition worsened. “Receiving the diagnosis of Epidermolysis Bullosa (EB) brought little comfort,” she recalls. “Watching someone you…
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By: The Phoenix Warrior Understanding Scleroderma: Symptoms, Treatments, and Hope for Patients Introduction Imagine waking up one day to find your skin tightening, your fingers turning blue in the cold, or even struggling to swallow food. For people with scleroderma, a rare and complex autoimmune disease, these are daily realities. Affecting an estimated 75,000 to…
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A Life in the Shadows: The Urgency of Addressing Rare Diseases By the Phoenix Warrior Maria was only six months old when her parents noticed she wasn’t meeting developmental milestones. After years of medical appointments, misdiagnoses, and relentless searches for answers, she was finally diagnosed with Niemann-Pick Disease Type C. This rare genetic disorder impairs…
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Challenges Faced by Patients with Chronic Conditions in an Overlooked Health System: The Role of Patient Advocacy Patients with chronic conditions face a range of unique challenges in health systems that do not prioritize their long-term care needs or well-being. This is especially true in countries where economic, political, and other pressing issues often precede…
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Manila, Philippines – April 29, 2024 – In a landmark agreement signed today, Psoriasis Philippines (PsorPhil), a leading patient advocacy group, and Tondo Medical Center (DOH-TMC) join forces to launch the world’s first collaborative care project designed explicitly for Filipinos battling Generalized Pustular Psoriasis (GPP), a rare and debilitating form of psoriasis. A Beacon of…
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