Don’t Miss National Eosinophil Awareness Week!

It's time to raise awareness for and celebrate the patient population that lives with eosinophilic disorders. From May 15th until the 21st, the American Partnership for Eosinophilic Disorders (APFED) is…

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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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Cornelia de Lange (CDLS) Syndrome Awareness day is May 14th and Support is Needed Now More Than Ever
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Cornelia de Lange (CDLS) Syndrome Awareness day is May 14th and Support is Needed Now More Than Ever

  It is believed that in 1916 a German doctor named Brachmann first identified a patient with symptoms of a disease later known as Cornelia de Lange syndrome. Then in…

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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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ICYMI: Swimmer’s 100km Swim Raised Huntington’s Disease Awareness
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ICYMI: Swimmer’s 100km Swim Raised Huntington’s Disease Awareness

HTT gene mutations cause Huntington’s disease, a rare and inherited neurological condition. Those with a family history of Huntington’s disease may choose to undergo genetic testing to learn more, though…

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6 Myths About Ovarian Cancer Debunked
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6 Myths About Ovarian Cancer Debunked

Misconceptions exist about many rare diseases. In fact, the efforts of many advocates are focused on education and dispelling these myths. Recently, an article in the Hindustan Times did just…

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February is Turner Syndrome Awareness Month!
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February is Turner Syndrome Awareness Month!

February 1st marked the beginning of Turner Syndrome Awareness Month, which is an entire month dedicated to learning about this rare disease and raising awareness. The Turner Syndrome Foundation (TSF) has…

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It’s Congenital Heart Defect Awareness Week: Here’s What You Need to Know
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It’s Congenital Heart Defect Awareness Week: Here’s What You Need to Know

The week of February 7-14, 2022 is being recognized as Congenital Heart Defect Awareness Week, a time to help spread awareness about congenital heart defects. While individual heart defect conditions…

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