Three Young People With Chronic Illness Talk About the Challenges They Face
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Three Young People With Chronic Illness Talk About the Challenges They Face

  Three people with an eye on the future talk about their innermost feelings and the fact that their lives may be interrupted at any time by their chronic illness.…

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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?
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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?

According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…

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May is Cystic Fibrosis Awareness Month: Spreading Rare Disease Awareness
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May is Cystic Fibrosis Awareness Month: Spreading Rare Disease Awareness

May is recognized annually as Cystic Fibrosis (CF) Awareness Month. Each year, this rare disease community comes together in order to help spread awareness about cystic fibrosis among the general…

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Exploring A Lung Disease So Rare There Are Only 7 Diagnoses: NEK10 Case Study
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Exploring A Lung Disease So Rare There Are Only 7 Diagnoses: NEK10 Case Study

When the 31-year-old woman showed up to Massachusetts General Hospital with a nasty respiratory infection, she was somewhat used to it. In fact, she had been plagued with respiratory problems…

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Rationing Care, Weighing Lives: How COVID-19 Equipment Shortages Can Harm Patients
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Rationing Care, Weighing Lives: How COVID-19 Equipment Shortages Can Harm Patients

According to the Daily Beast, the increasing spread of COVID-19 is causing real problems around the globe - and not just in the way that you might think. This viral…

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NTM Info & Research Creates Educational Tool for Patients with Bronchiectasis
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NTM Info & Research Creates Educational Tool for Patients with Bronchiectasis

According to an article in the Baker City Herald, a non-profit organization has launched a website designed to support and educate patients with bronchiectasis. NTM Info & Research advocates for patients…

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Arrowhead Pharmaceuticals Files for Clearance for Cystic Fibrosis Treatment Trial
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Arrowhead Pharmaceuticals Files for Clearance for Cystic Fibrosis Treatment Trial

Arrowhead Pharmaceuticals has recently submitted an application to the New Zealand Medicines and Medical Devices Safety Authority for the clearance of a clinical trial. They want to test their cystic…

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Handling Rare Diseases and COVID-19: National Organization for Rare Disorders Reminds You to Stay Strong
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Handling Rare Diseases and COVID-19: National Organization for Rare Disorders Reminds You to Stay Strong

  If you're worried or anxious because of COVID-19, you're not alone. If wondering about the intersection of rare diseases and COVID-19 only increases that anxiety, well, we're with you…

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Company Raises $80 Million to Develop Treatment for Cystic Fibrosis Linked to Rare Mutations
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Company Raises $80 Million to Develop Treatment for Cystic Fibrosis Linked to Rare Mutations

According to a story from Fierce Biotech, there have been some impressive advances in the treatment of cystic fibrosis recently. The latest milestone was in developing and approving the drug…

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Cystic Fibrosis Patients Are Living Longer Thanks to Improved Clinical Practices and Therapies
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Cystic Fibrosis Patients Are Living Longer Thanks to Improved Clinical Practices and Therapies

  My American Nurse recently carried an uplifting article showing increasingly positive changes for cystic fibrosis (CF) patients. A network of over one hundred thirty centers throughout the U.S. provide…

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Study Assesses Rare Disease Treatments for Children From 2010-2018
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Study Assesses Rare Disease Treatments for Children From 2010-2018

According to a story from Charcot-Marie-Tooth News, a new study highlights the advances that have been made in the last decade for treating rare diseases that affect children. However, the…

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