The Pulmonary Arterial Hypertension Community in Serbia Works to Raise Awareness
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The Pulmonary Arterial Hypertension Community in Serbia Works to Raise Awareness

According to a story from Pulmonary Hypertension News, It has been three years since Miloš Lazić had is first encounter with pulmonary arterial hypertension. As an active member of Serbia's…

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Could This Mouth Swab Save Lives? Genepath Test Diagnosis Krabbe Disease and Much More
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Could This Mouth Swab Save Lives? Genepath Test Diagnosis Krabbe Disease and Much More

Ashley Wibberly’s son Levi was born in September of 2013 and lived for just 20 months with Krabbe disease. Ashley couldn’t have seen it coming. Now, however, a new test…

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An Introduction to PANDAS, a Rare Disorder That Can Cause Violent Behavior in Children
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An Introduction to PANDAS, a Rare Disorder That Can Cause Violent Behavior in Children

According to a story from ABC News, Alexia Baier was four years old when she came down with strep throat, an infection caused by group A streptococcus bacteria. It is a…

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For Children With Debilitating Illness, the Wait for Medical Equipment Can be Agonizing
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For Children With Debilitating Illness, the Wait for Medical Equipment Can be Agonizing

According to a story from the Los Angeles Daily News, for children with debilitating rare illnesses like cerebral palsy, epilepsy, or muscular dystrophy, it can often take a long time…

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Vacation Gone Wrong: Teen Opens Up About Her Sudden Paralysis Due to Rare Disease

People Magazine published an article about 20-year-old Kara Dunn who suddenly became paralyzed during a vacation to Spain, due to a rare disease she didn't know she had. Guillain-Barré Syndrome…

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Patient Activists are Speaking Out After NHS England Decided Not to Fund a Drug to Treat TSC-Associated Epilepsy
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Patient Activists are Speaking Out After NHS England Decided Not to Fund a Drug to Treat TSC-Associated Epilepsy

The National Health Service (NHS) England is facing criticism following their decision not to fund the drug everolimus as a treatment for tuberous sclerosis complex associated refractory epilepsy. In comparison,…

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