The Center for Chronic Illness’s Support Groups: A Resource for Community and Support for Rare Disease Patients
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The Center for Chronic Illness’s Support Groups: A Resource for Community and Support for Rare Disease Patients

The Center for Chronic Illness is a nonprofit group that is based out of Seattle, Washington. The goals of this organization include the provision of support and educational resources to…

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A Potential Treatment for Idiopathic Pulmonary Fibrosis Earns Orphan Drug Designation
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A Potential Treatment for Idiopathic Pulmonary Fibrosis Earns Orphan Drug Designation

According to a story from Financial Buzz, the biotherapeutics company Bellerophon Therapeutics Inc. has recently announced that it has earned Orphan Drug designation from the US Food and Drug Administration…

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When is a yes a yes, and when is it an ‘I can’t say no’?  For Persons with Disabilities, Consent is Complicated
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When is a yes a yes, and when is it an ‘I can’t say no’? For Persons with Disabilities, Consent is Complicated

Consent is a concept back under discussion in modern conversations as we readdress what it means to cross the line. Consent is no longer seen in the black and white…

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This Doctor’s Life Changed Forever When His Son Was Born With Spinal Muscular Atrophy
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This Doctor’s Life Changed Forever When His Son Was Born With Spinal Muscular Atrophy

According to a story from medicalxpress.com, Dr. Nathan Hoot is an emergency medical physician, but his role as a doctor doesn't entirely end when he leaves the hospital because his…

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The Phase 3 Trial in Diabetic Peripheral Neuropathy May Have Failed Due to a Critical Mistake

  FierceBiotech recently reported that Helixmith Co., based in Korea and previously known as ViroMed, coordinated a Phase 3 clinical trial involving five hundred diabetic peripheral neuropathy (DPN) patients. The…

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FDA Listening Session: Fibrodysplasia Ossificans Progressiva

On May 29th, 2019, the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) alongside other members of the fibrodysplasia ossificans progressiva community, sat down for an hour long 'listening session' with representatives…

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Findings From a Mouse Study Could Have Major Implications for Scleroderma
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Findings From a Mouse Study Could Have Major Implications for Scleroderma

According to a story from Scleroderma News, the results of a recent mouse study could have significant implications for the future of scleroderma treatment. In the study, scientists used a…

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Positive Findings in Phase 2 Study of Refractory Status Epilepticus Drug Candidate
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Positive Findings in Phase 2 Study of Refractory Status Epilepticus Drug Candidate

According to a recent press release from the Pennsylvania-based Marinus Pharmaceuticals, the Company is reporting positive results of its phase 2 study of "ganaxolone," an investigational GABAA modulator for patients…

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More than 4% of People May be Immunocompromised – How Should They Approach Flu Season?
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More than 4% of People May be Immunocompromised – How Should They Approach Flu Season?

A recent publication from Healio detailed some of the challenges immunocompromised individuals might face during flu season. Influenza is a common and sometimes serious public health concern around the world, and…

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Vaping: Sleek, Tastes like Bubblegum, Still Causes Lung Disease. This Time, It’s Not Clear Why.
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Vaping: Sleek, Tastes like Bubblegum, Still Causes Lung Disease. This Time, It’s Not Clear Why.

Most young people are familiar with vaping: nicotine or THC repackaged in a sleek and less stigmatized device. It is less obviously recognizable as destructive as cigarettes in part because…

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Firma Clinical Research Incorporates Patient “Lived Experience” Into Training Materials
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Firma Clinical Research Incorporates Patient “Lived Experience” Into Training Materials

According to a story from outsourcing-pharma.com, the company Firma Clinical Research, which provides health care services to patients in clinical trials, has been getting a lot of business lately. This…

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The FDA Approves First Pediatric Treatment for Rare Forms of Vasculitis
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The FDA Approves First Pediatric Treatment for Rare Forms of Vasculitis

According to a story from finanzen.ch, the US Food and Drug Administration (FDA) recently approved the drug rituximab (marketed as Rituxan) as a treatment in child patients aged at least…

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Researchers Identify Link Between Immune Cells and Genetic Signatures Associated with Autoimmune Disease
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Researchers Identify Link Between Immune Cells and Genetic Signatures Associated with Autoimmune Disease

According to a publication from EurekAlert, a study recently published in the medical journal Nature Genetics suggests how certain immune cells express genetic activity similar to that of variations of the…

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