Como se informó en Chicago Reader; a veces, la única forma de lidiar con horrores de salud insuperables es reír. Al menos así es como lo manejó Ben Byer, ya…
As reported in the CCA Blog, COVID-19 is reminding everyone what self-care means. When we can't rely on turning outwards to seek joy and comfort and good health, we must…
In a story from Vietnam News, doctors in Hanoi, Vietnam at the Central Paediatrics Hospital announced for the first time that they had performed a successful bone marrow transplant using…
As reported in CCA Kids Blog, the state of the world right now leaves us with many unanswered questions that can trigger a mayhem of emotions. When reconciling something that recolors…
As reported in CCAKids Blog, 2020's contagion has imposed a strange new set of rules and precautions for leaving the house. The latest CDC recommendation has told all of America…
As reported in Biospace, a new gene therapy has made notable progress towards curing x-linked retinitis pigmentosa, a disease responsible for sight loss in men. Until now, the disease irreversibly…
As reported in Chicago Reader; sometimes, the only way to deal with unsurmountable health horrors is to laugh. At least that's how Ben Byer handled it, as he set into…
Judy had been living an active lifestyle after she retired as a library assistant for Portland Public Schools for 30 years. She kept up with her lifelong love, ice skating,…
As originally reported in Biospace, Cushing disease, a disease due to excessive cortisol, has recently had its first ever treatment option approved by the FDA for adult patients who are…
According to a story from Biospace, in Palo Alto, AI company Emedgene plans to dive into helping the undiagnosed with their new rare disease initiative. The company will be paired…
As sourced from QZ, trials for new medications are notoriously tedious. Rare disease populations know more than most that the barriers to meeting the entry criteria of a trial can…
Como se informó originalmente en Global News., La adolescente de Nuevo Brunswick, Mackenzie Walsh, cumplirá 16 años esta semana, pero no quiere un automóvil o una dulce fiesta de 16.…
Emily Knakmuhs's two-and-a-half-year-old Kennedie had just made it past a tough couple of years. When she was born, her family noticed she wasn't growing, but her pediatrician attributed it to…
As originally reported in News Medical, a new study suggests that gastric bypass bariatric surgery may be the most effective treatment for non-alcoholic fatty liver disease (NAFLD). This disorder currently…
As originally reported in Fabry Disease News, the potentially fatal genetic disorder Fabry disease can be diagnosed most effectively in infancy by newborn screening programs. By identifying the disease early,…
As originally reported in Smart Parenting; many families with rare diseases are struggling to keep up with their healthcare regime as new restrictions block families from accessing doctors and normal…
As originally reported in Global News.,New Brunswick teen Mackenzie Walsh will be 16 this week, but she doesn't want a car or a sweet 16 party. She wants to go…
As originally reported in Porphyria News, rare diseases have historically been neglected by traditional medicine; their obscure and often genetic nature made them lack priority, stuck behind a long list…
As originally reported in Yahoo Finance, the coronavirus is disrupting many of our expectations of how we planned to live out the next few months. Some frequenters of the hospitals…
As originally reported in European Pharmaceutical Manufacturer Magazine, Chiesi, an Italian pharmaceutical company, has announced they will be launching a new division for rare disease research and therapy innovation. The…
As originally reported in Live 99.9; when Melissa and Chris Courson found out the baby they were expecting in a few months would be born with the rare thantophoric dysplasia,…
As originally reported in Edinburgh Evening News; Assed Ramae felt the depths of familial love when he received his younger sisters kidney, saving him from the decline from his stage…
As originally reported in Discover Magazine, Huda Zoghbi took an unexpected route to winning the Breakthrough Prize in Life Sciences in 2017 for her discoveries of the genes responsible for…
The first few days of quarantine can feel like a vacation. Finally you have an excuse to say no, stay home, and watch reality TV, and there's nothing anybody can…
As originally reported in Biospace, there’s good news today for adult patients with acute hepatic porphyria in Europe, a genetic disorder which causes pain and paralysis. The European Commission has…
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