With Time Running Out, an Artist With Cystic Fibrosis Reflects on Her Art and Experiences as a Patient
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With Time Running Out, an Artist With Cystic Fibrosis Reflects on Her Art and Experiences as a Patient

According to a story from BBC, 35 year old Kimberly Chard knows that she probably doesn't have much longer to live. Kimberly was born with cystic fibrosis, a rare disorder…

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Experimental Beta Thalassemia Drug Gains Temporary Short-Term Approval in Europe
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Experimental Beta Thalassemia Drug Gains Temporary Short-Term Approval in Europe

According to a publication from BNN Bloomberg, regulatory authorities in the European Commission recently granted conditional marketing authorization (CMA) to Zynteglo. Zynteglo is a gene therapy designed to treat beta…

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Personalized Seatbelt Covers Provide Critical Medical Info for Rare Disease Patients in Case of Accident

No one ever likes to think about worst possible scenarios. But sometimes by thinking about these things for a small period of time, we can make simple preparations which could…

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Very First Patient Dosed with Investigational Therapy for Friedreich’s Ataxia in Phase 2 Clinical Trial

Friedreich's Ataxia Friedreich's ataxia (FRDA) is a rare disease which is caused by a frataxin deficiency. This deficiency results in the degeneration of nerves within the spinal cord. This nerve…

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Study Suggests That The Affordable Care Act Helped Reduce Racial Disparities in Chemotherapy Access
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Study Suggests That The Affordable Care Act Helped Reduce Racial Disparities in Chemotherapy Access

According to a story from statnews.com, a recent study found that the Affordable Care Act was able to help reduce differences in access to critical cancer treatment between black and…

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Let the Men in Your Life Know About Men’s Health and Rare Diseases for Father’s Day

June 10th through 16th is Men Health's/Rare Dads Week! We would like to devote some attention to the rare diseases that affect mostly men - because to quote Congressman Bill…

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The FDA, Congress, A Young Woman Dying of ALS, Her Physician, and Her Parents Are All Struggling Over Access to an Untested Therapy

1032 words 6% vs 3711 words 2% The Hermstads of Spencer, Iowa lost Jaci’s twin to ALS and now they must watch Jaci, rapidly descend into the depths of the…

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