International Nonalcoholic Steatohepatitis (NASH) Day Sparks New Collaboration for Research
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International Nonalcoholic Steatohepatitis (NASH) Day Sparks New Collaboration for Research

International NASH Day, or IND, began in 2018 to raise awareness of nonalcoholic steatohepatitis (NASH). This is the most advanced form of fatty liver disease. It is a progressive condition…

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US Veterans with Pulmonary Hypertension Are Not Treated with Exercise Rehabilitation

According to Healio, US veterans affected by pulmonary arterial hypertension are typically not treated with exercise rehabilitation, despite the fact that many medical professionals believe that utilizing exercise rehabilitation in…

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June is Scleroderma Awareness Month: Spreading Rare Disease Awareness
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June is Scleroderma Awareness Month: Spreading Rare Disease Awareness

According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month. While physical distancing as a result of the ongoing coronavirus/COVID-19 pandemic may keep some folks at…

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High Uric Acid in Men with Parkinson’s Increases Risk for Levodopa-Induced Dyskinesia
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High Uric Acid in Men with Parkinson’s Increases Risk for Levodopa-Induced Dyskinesia

As reported in Parkinson’s News Today, a new study has found that high blood levels of the antioxidant uric acid is correlated with heightened risk of developing levodopa-induced dyskinesia (LID)…

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This Woman is the First Ever Patient to Have Both aHUS and Cobalamin C Deficiency

When the 19-year-old French woman first visited the hospital, she was extremely lethargic. She displayed neurological symptoms. Upon kidney failure, the patient was admitted into the ICU. But soon, doctors…

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Portuguese Authorities Approve Treatment for HATTR Amyloidosis Polyneuropathy
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Portuguese Authorities Approve Treatment for HATTR Amyloidosis Polyneuropathy

According to a story from PR Newswire, Akcea Therapeutics, Inc. recently announced that the Portuguese Medicine Regulatory Authority (INFARMED) has announced its approval of reimbursement for inotersen (marketed as TEGSEDI®)…

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Expressive Language Sampling May Lead to Treatment Options for Fragile X Syndrome
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Expressive Language Sampling May Lead to Treatment Options for Fragile X Syndrome

By Danielle Bradshaw from In The Cloud Copy Expressive language sampling, or ELS, could potentially help researchers better measure how well treatments work for patients with fragile X syndrome or…

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On July 1, the Marfan Foundation and Loeys-Dietz Syndrome Foundation Will Officially Partner Up
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On July 1, the Marfan Foundation and Loeys-Dietz Syndrome Foundation Will Officially Partner Up

Education, research, support, and patient advocacy: these are just four of the amazing things that rare disease or disorder foundations offer. Many foundations seek to offer programs and resources to…

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