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Hao-Fountain Syndrome (USP7): Patient Stories and Research

Expert's View / By Blog / November 29, October 29,

Post Views: 9 Archith James Smith is the co‑founder of the Foundation for Hao‑Fountain Syndrome, a global initiative born from his family’s own rare disease journey. When his daughter was diagnosed with Hao‑Fountain Syndrome, James transformed years of uncertainty into a mission: to connect families, accelerate research, and advocate for better access to care. Because …

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4 Inspiring Ways to Cope with Huntington’s Disease: Michael’s Story

Patient Stories / By Blog / November 18, November 29,

Post Views: 3 Archith At our platform, we believe the most powerful insights come not just from research and statistics, but from lived experience. Today, we are honored to share the story of Michael Turner, a 42‑year‑old father of two from Austin, Texas, who is living with Huntington’s disease. Michael’s journey is one of resilience, …

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Indian Renal Diet Plan: Nourish Your Kidneys with Authentic Food Wisdom

Expert's View / By Blog / November 4, November 6,

Post Views: 288 Archith This insightful blog was written exclusively for Ordinarily Rare by Dr. Jyoti Singh, a seasoned nutritionist with deep expertise in renal diet planning. With years of experience guiding patients through the complexities of kidney care, Dr. Singh brings a rare blend of clinical precision and cultural sensitivity to her work. Her …

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7 Ways How A Gluten Free Diet Helped My Chronic Disease

Patient Stories / By Blog / October 26, October 27,

Post Views: 176 Archith Garry isn’t just a writer, he’s a survivor and a guide. Living with Hashimoto’s Thyroiditis, a chronic autoimmune condition, he knows firsthand the daily challenges of managing health while trying to live fully. Through his blog, Garry shares how adopting a gluten-free lifestyle transformed his journey. What once felt like survival …

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4 Ways Iyengar Yoga Works for Chronic and Rare Diseases

Expert's View / By Blog / October 20, November 6,

Post Views: 628 Archith At Ordinarily Rare, we feature voices that bring clarity and hope to those living with uncommon health journeys. One such voice is Guru Prakash Iyer, an Iyengar Yoga teacher based in Pune, Maharashtra. It is the city where B.K.S. Iyengar built his global legacy. With years of experience in Iyengar Yoga …

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Incurable Pancreatic Disease: Causes, Treatments & Patient Hope

Patient Stories / By Blog / October 13, November 6,

Post Views: 258 Archith When we hear the word pancreas, most of us think of diabetes. But… Our pancreas is far more than a sugar regulator. It’s a small, leaf-shaped organ tucked behind the stomach that quietly runs some of the most important processes in our body. It produces enzymes that help digest food and …

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Morgellons Disease: Symptoms, Causes & Controversies Explained

Patient Stories / By Blog / October 1, October 13,

Post Views: 636 Q-1) Could you describe your story from getting diagnosed to having been cured? A-1: I started experiencing Morgellons disease symptoms when I was 24. I had all the hallmark symptoms of the disease. Deep, slow-healing lesions, fibers protruding from the unbroken skin, brain fog, and fatigue. I had no idea what Morgellons disease …

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Ayurvedic Expert’s Guide to Healing Rare and Chronic Diseases

Expert's View / By Blog / September 17, November 6,

Post Views: 630 Archith We are delighted to share an insightful article by Dr. Aravind Subramanian, an Ayurvedic physician from Chennai. With years of experience and a deep respect for India’s healing traditions, Dr. Aravind writes to help us understand Ayurveda in a way that feels practical and approachable. In this piece, he focuses on …

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13 Extraordinary Ways to Combat Fatigue and Gain Energy

Patient Stories / By Blog / September 14, October 13,

Post Views: 286 Archith Louis is as brave as his name suggests, facing every challenge with remarkable courage. He lives with Morvan syndrome, a rare condition that tests both body and mind, yet he continues to turn his struggles into strength. In this blog, Louis discusses his symptoms and the lessons he has learned along …

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Aarskog Syndrome: Signs, Supporting Families, and Navigating Rare Diagnosis

Patient Stories / By Blog / August 10, November 6,

Post Views: 214 I’m Liam, father to a bright, funny, and determined girl named Orla. She’s 14 now, and if you met her, you’d probably notice her laughter before anything else. It fills a room, and it’s the kind of laughter that makes you forget your worries for a moment. But behind that laughter is …

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