Sisters with Multiple Sclerosis Share Their Scary Stevens-Johnson Syndrome Story In an Effort to Spread Awareness

An Unexpected Emergency Kristin Hardy and her sister Margaret are no strangers to rare disease. Kristin has primary progressive multiple sclerosis (MS) and Margaret has relapsing-remitting multiple sclerosis. Margaret also…

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The Struggles of being a Rare Disease Patient in China

The State of Rare Diseases in China The Illness Challenge Foundation (ICF) is an organization devoted to easing the burdens that rare disease patients living in China face. They accomplish this…

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How Changing to Outcome-Based Reimbursement Models is Better for Rare Disease Patients

Shifting Contracts Over the years the United States healthcare system has shifted more toward reimbursement models that are outcome-based instead of service-based. In essence, this means that instead of paying…

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First Patient Enrolled in Phase 2 Trial for Experimental RRMS Drug
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First Patient Enrolled in Phase 2 Trial for Experimental RRMS Drug

According to a publication from Multiple Sclerosis News Today, German biotechnology company Immunic Therapeutics has successfully enrolled the first participant for its phase 2 clinical trial for experimental relapsing-remitting multiple…

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Study Shows We Need Better Awareness of Pediatric Onset Multiple Sclerosis to Improve Patient Care
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Study Shows We Need Better Awareness of Pediatric Onset Multiple Sclerosis to Improve Patient Care

Multiple Sclerosis (MS) was long believed to be an illness that could only affect adults. In fact, the pediatric form of this disease was not discovered until just over 10…

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New Orphan Drug Designation for Potential Spinocerebellar Ataxia Treatment
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New Orphan Drug Designation for Potential Spinocerebellar Ataxia Treatment

Spinocerebellar Ataxia (SCA) refers to a group of neurodegenerative disorders. Ataxias are a component of the nervous system which control movement. SCA occurs when the ataxias in the brain or spinal…

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How Planning a Wedding Solved the Riddle of a Sister’s Mysterious Illness
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How Planning a Wedding Solved the Riddle of a Sister’s Mysterious Illness

The Heritage Florida Jewish News reported a story about one sister's journey to her Gaucher Disease diagnosis, thanks to her older sister's wedding prep. What is Gaucher Disease? Gaucher disease…

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