At Age 6, A Boy Finally Discovers His Disease: He’s The First To Be Diagnosed With It
PNH causes the immune system to destroy red blood cells. Source: pixabay.com

At Age 6, A Boy Finally Discovers His Disease: He’s The First To Be Diagnosed With It

Originally reported in People Magazine, a family struggled for years to figure out what was happening to their son, Cohen Bramlee, who for years received his nutrients from a central…

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UPDATE: Trump Admin Reconsiders Decision to Deport Migrants Receiving Life-Saving Treatment 

Last week, we spotlighted a New York Times story about how under the Trump Administration’s new immigration policy, six migrants undergoing lifesaving treatments would be abruptly deported; including a young woman…

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A Tale of Two Sisters With Cystic Fibrosis Highlights the Barriers to Treatment Access That Still Remain
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A Tale of Two Sisters With Cystic Fibrosis Highlights the Barriers to Treatment Access That Still Remain

According to a story from the Sunday Post, sisters Shona and Kirsty Young, aged 24 and 29 years respectively, were both born with the devastating rare disease cystic fibrosis. However,…

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Zogenix Acquires Modis in $400 Million Buyout, Adds Experimental TK2 mDNA Depletion Syndrome Treatment to Pipeline

According to a press release from California-based biotechnology company Zogenix, the Company recently completed a multi-million dollar acquisition of Modis Therapeutics. Before its acquisition, Modis focused on the development of…

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Patient Advocacy Groups Call for Indian Health Ministry to Implement Interim Care Policy for Rare Disease Patients
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Patient Advocacy Groups Call for Indian Health Ministry to Implement Interim Care Policy for Rare Disease Patients

According to a recent publication from Moneycontrol, patient advocacy groups in India are calling for the country's Minister of Health and Family Welfare, Harsh Vardhan, to establish a provisional system…

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Korean Company Predicts Your Risk of Developing Certain Genetic Conditions by Sequencing Your Genome
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Korean Company Predicts Your Risk of Developing Certain Genetic Conditions by Sequencing Your Genome

According to a publication from the Korea Times, the Eone Diagnomics Genome Center in Incheon, South Korea, is working to improve patients' accessibility to their own genetic sequence. Researchers believe…

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