September 21-25 is Global ITP Awareness Week: Spreading Rare Disease Awareness
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September 21-25 is Global ITP Awareness Week: Spreading Rare Disease Awareness

In 2020, September 21-25 will be recognized as Global Immune Thrombocytopenia (ITP) Awareness Week. The week will aim to help spread awareness about ITP around the world both in the…

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September is Charcot-Marie-Tooth Disease Awareness Month: Spreading Rare Disease Awareness
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September is Charcot-Marie-Tooth Disease Awareness Month: Spreading Rare Disease Awareness

September is recognized as Charcot-Marie-Tooth disease (CMT) Awareness Month. Although this illness is one of the most widespread inherited genetic disorders, there is still a significant need to spread awareness…

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September is Pulmonary Fibrosis Awareness Month: Spreading Rare Disease Awareness
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September is Pulmonary Fibrosis Awareness Month: Spreading Rare Disease Awareness

According to a story from Newswise, September is recognized as Pulmonary Fibrosis Awareness Month. This includes idiopathic pulmonary fibrosis (IPF), or disease without an identifiable cause. In the midst of…

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Habit Cough: An Unusual Form of Chronic Cough That Can be Cured Over Zoom
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Habit Cough: An Unusual Form of Chronic Cough That Can be Cured Over Zoom

Bethany Buettner had started coughing...a lot. She had recently faced pneumonia, but after a course of antibiotics she appeared to have recovered...except for her persistent cough. It wasn't long before…

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GRIN Disorder: Don’t Miss the CureGRIN Foundation’s GRIN Virtual Conference
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GRIN Disorder: Don’t Miss the CureGRIN Foundation’s GRIN Virtual Conference

The CureGRIN Foundation has recently announced that its annual conference will be held virtually this year as a result of the ongoing coronavirus/COVID-19 pandemic. This year's event will be held…

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These Organizations Want to Give an Adaptive Bicycle to Every Disabled Child
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These Organizations Want to Give an Adaptive Bicycle to Every Disabled Child

  Zacari was born with a rare neuromuscular disorder called arthrogryposis multiplex congenita. Children with the disease are unable to straighten or bend their legs or arms. Yet, according to…

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The Brighter Days Care Package Program for Cystinosis Patients and Families has Launched
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The Brighter Days Care Package Program for Cystinosis Patients and Families has Launched

The Cystinosis Research Network (CRN) has created a new program to bring light to cystinosis families during these uncertain times. It is called the Brighter Days Care Package Program. Brighter…

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August is Stevens-Johnson Syndrome Awareness Month: Spreading Rare Disease Awareness
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August is Stevens-Johnson Syndrome Awareness Month: Spreading Rare Disease Awareness

The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this event is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…

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