May is Amyotrophic Lateral Sclerosis Awareness Month: Spreading Rare Disease Awareness
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May is Amyotrophic Lateral Sclerosis Awareness Month: Spreading Rare Disease Awareness

According to a story from ALS News Today, around 5,000 people get diagnosed with amyotrophic lateral sclerosis (ALS) annually. In addition, costs of treatment for patients average $250,000 out of…

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The Latest Webinar from NORD Showcases the Rare Disease Patient Experience
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The Latest Webinar from NORD Showcases the Rare Disease Patient Experience

On April 28, 2022, the National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition hosted a webinar program titled "Walk in Our Shoes: The Experience of Rare…

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Study of the Week: Do These Protein Fibrils Suggest a Connection Between Certain Neurodegenerative Diseases?

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…

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International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness
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International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness

International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day is recognized each year on April 23rd. This is a time for spreading awareness about this rare disorder among both the general public…

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Nelson is Running the Boston Marathon in Honor of His Brother, Who Died From Cholangiocarcinoma
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Nelson is Running the Boston Marathon in Honor of His Brother, Who Died From Cholangiocarcinoma

Nelson Ambrogio had always looked up to his older brother, Daniel. He has many positive memories of growing up with him. They both shared a passion for soccer, and Nelson…

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Making a Difference: An Interview With Debra Miller on the Founding of CureDuchenne
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Making a Difference: An Interview With Debra Miller on the Founding of CureDuchenne

CureDuchenne is one of Patient Worthy's partner organizations. Patient Worthy partners with a variety of rare disease and patient-oriented non-profits in order to collaborate and help promote one another's activities.…

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