FH Summit 2019 Highlights
The 2019 FH Summit was a productive and moving event that brought patients and researchers together from all over the world. Katherine A. Wilemon, founder and CEO of the FH…
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FH Summit 2019 Highlights
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Study Reveals a Key Difference Between People of Color with Multiple Sclerosis and Whites
According to a story from Multiple Sclerosis News Today, a recent study has revealed a never-before-seen difference in multiple sclerosis patients of different racial backgrounds. The research found that people…
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Study Reveals a Key Difference Between People of Color with Multiple Sclerosis and Whites
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Muscular Dystrophy Association’s Pompe Disease Patient Focused Drug Development Meeting Cleared by FDA
According to a story from tradeshownews.vporoom.com, the Muscular Dystrophy Association (MDA) has recently announced the official approval of its Patient-Focused Drug Development (PFDD) meeting by the US Food and Drug…
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Muscular Dystrophy Association’s Pompe Disease Patient Focused Drug Development Meeting Cleared by FDA
Continued Positive Results for Amyotrophic Lateral Sclerosis Phase 1/2 Trial
An amendment is being planned for an ongoing Phase 1/2 clinical trial for amyotrophic lateral sclerosis (ALS). This intention has just been announced by the cell therapy company Kadimastem. However,…
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Continued Positive Results for Amyotrophic Lateral Sclerosis Phase 1/2 Trial
The Importance of Emotional Support for Children with Chronic Illnesses
It wasn’t until the 1980s that the medical field really started talking about the need to emotionally support patients, especially those with chronic illnesses. This is partly due to the…
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The Importance of Emotional Support for Children with Chronic Illnesses
How to Support a Friend or Family Member Dealing with a Rare Disease Diagnosis
I have been writing for this website for a little over 2 years. Neatly collecting, reading, and reporting on stories of people with rare conditions and disabilities. Little did I…
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How to Support a Friend or Family Member Dealing with a Rare Disease Diagnosis
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The FDA Approves New Treatment for Chronic Lymphocytic Leukemia Under an International Program
According to a story from PR Newswire, the US Food and Drug Administration (FDA) has recently granted supplemental approval to the drug acalabrutinib (marketed as Calquence) as a treatment for…
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The FDA Approves New Treatment for Chronic Lymphocytic Leukemia Under an International Program
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“We Don’t Know Anything:” a Mitochondrial Encephalomyopathy Story From the Czech Republic
When Lucinka was born, it seemed like everything was all right. But it wasn’t. Lucinka wasn’t doing well, and a whirlwind of examinations began. First, a diagnosis couldn’t be made.…
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“We Don’t Know Anything:” a Mitochondrial Encephalomyopathy Story From the Czech Republic
