Step Therapy Supposedly Minimizes Risk, but for Brittany it Caused Severe Complications

  The Providence Journal recently published an article by Brittany Ricci, a student at Brown University’s Alpert Medical School, detailing her year-long struggle to receive the treatment her doctor had prescribed…

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Man with Rare Disease Organizes Musical Ensemble with Other Chronic Disease Patients 

Talk about a bittersweet symphony! Published on Yale University's online paper, recent grad Jordan Plotner -- who is living with Ehlers-Danlos syndrome (EDS) -- organized a virtual musical ensemble with other…

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Pompe Disease Treatment Has Come a Long Way Since This Patient Was First Diagnosed
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Pompe Disease Treatment Has Come a Long Way Since This Patient Was First Diagnosed

According to a story from healthbeat.spectrumhealth.org, Tasha Veinbergs was 13 years old when she was first diagnosed with Pompe disease. She was visiting the doctor to treat a small cyst…

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ICYMI: New Treatment for Scleroderma Lung Disease Approved by the FDA
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ICYMI: New Treatment for Scleroderma Lung Disease Approved by the FDA

According to a story from American Nurse Today, the US Food and Drug Administration (FDA) approved a treatment on September 6th, 2019 for interstitial lung disease associated with scleroderma, a…

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UK’s NICE Recommends Coverage for Hereditary Angioedema Drug Takhzyro
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UK’s NICE Recommends Coverage for Hereditary Angioedema Drug Takhzyro

According to a story from Angioedema News, the UK's National Institute for Health and Clinical Excellence (NICE) has officially recommended the drug lanadelumab (marketed as Takhzyro) for coverage under the…

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