Author name: Blog

Cardiomyopathy: The Day Everything Changed for the Family

Post Views: 180 Will Tyson: A Heartfelt Advocate Will Tyson lives with a rare genetic heart disease called cardiomyopathy, just like his father, Mark. Their shared diagnosis changed everything, but instead of staying silent, Will chose to speak up. At 19, Will collapsed while playing basketball. That moment led to a life of medical care,

Cardiomyopathy: The Day Everything Changed for the Family Read More »

Can Artificial Intelligence Really Change the Future of Rare Diseases?

Post Views: 319 As 2025 draws to a close, one story rises above the noise, reshaping both India’s health and business landscape. Microsoft’s bold investment in Artificial Intelligence (AI) isn’t just fueling economic growth; it’s rewriting what care can feel like. From faster diagnoses to district clinics suddenly empowered with specialist knowledge. AI is transforming

Can Artificial Intelligence Really Change the Future of Rare Diseases? Read More »

Hao-Fountain Syndrome (USP7): Real Stories from a Condition Medicine Is Still Unraveling

Post Views: 412 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

Hao-Fountain Syndrome (USP7): Real Stories from a Condition Medicine Is Still Unraveling Read More »

Huntington’s Disease: The Part No One Told Michael About

Post Views: 271 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,

Huntington’s Disease: The Part No One Told Michael About Read More »

Renal Health: Indian Foods That Heal –And Harm –Your Kidneys

Post Views: 407 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

Renal Health: Indian Foods That Heal –And Harm –Your Kidneys Read More »

You cannot copy content of this page