This Mom is Helping Organize a Fundraiser for Neurofibromatosis in South Dakota
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This Mom is Helping Organize a Fundraiser for Neurofibromatosis in South Dakota

According to a story from keloland.com, Westin Cuka, age six, was first diagnosed with neurofibromatosis, a rare disorder, three years ago. Since then, the family has traveled on multiple occasions…

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Rare Pediatric Disease Designation Awarded to Investigative Therapy for POMC and LEPR Deficiency Obesities
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Rare Pediatric Disease Designation Awarded to Investigative Therapy for POMC and LEPR Deficiency Obesities

Rare pediatric disease designation has just been granted to Rhythm Pharmaceuticals for their investigative therapy called setmelanotide. This drug is being investigated as a therapeutic option for two conditions- leptin…

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Familial Chylomicronemia Syndrome Foundation Announces Support for HEART Act
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Familial Chylomicronemia Syndrome Foundation Announces Support for HEART Act

  In a July 9 press release, the Familial Chylomicronemia Syndrome (FCS) Foundation announced its support for a bill introduced by Congressman Paul Tonko (D-NY) and David B. McKinley (R-WV).…

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July 13th is GIST Awareness Day: Spreading Rare Disease Awareness
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July 13th is GIST Awareness Day: Spreading Rare Disease Awareness

Each year, June 13th is celebrated as Gastrointestinal Stromal Tumors (GIST) Awareness Day. The ultimate goal of awareness days for rare diseases is to help inform both the general public…

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COVID-19 and its Neurological Consequences: UK Scientists Unpack Brain-Related Complications
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COVID-19 and its Neurological Consequences: UK Scientists Unpack Brain-Related Complications

As COVID-19 grips the world, scientists are chasing after it to find the full spectrum of effects as it interacts with human biochemistry. While known for its characteristic cough and…

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