April 15th is International Pompe Day: Spreading Pompe Disease Awareness
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April 15th is International Pompe Day: Spreading Pompe Disease Awareness

April 15th, 2020 will be the 7th annual International Pompe Day, a day of recognition and fostering awareness around Pompe disease organized by the International Pompe Association. Like many rare…

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A New Treatment for Thyroid Eye Disease is Now FDA Approved
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A New Treatment for Thyroid Eye Disease is Now FDA Approved

According to a story from Biospace, the drug company Horizon Therapeutics plc has recently announced that the US Food and Drug Administration (FDA) has approved the company's drug teprotumumab-trbw (marketed…

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In Honor of Tay-Sachs Disease Awareness Month Organizations are Teaming Together to Spread Awareness of Genetic Testing

Tay-Sachs Disease September is Tay-Sachs Disease Awareness Month. Voted on by the Senate unanimously in 2008, this month aims to spread awareness about this disease and the importance of carrier…

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Making History: First Drug Approved for Scleroderma-Associated Interstitial Lung Disease
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Making History: First Drug Approved for Scleroderma-Associated Interstitial Lung Disease

According to a story from finanzen.at, the drug nintedanib (marketed as Ofev) has officially been approved by the US Food and Drug Administration (FDA) as a treatment for interstitial lung…

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The First Ever PFIC Network Family Conference will Bring Families Affected by the Disease Together This Week

Emily Ventura has never met in-person another person living with progressive familial intrahepatic cholestasis (PFIC), her daughter’s life-threatening ultra-rare genetic disease. That will change on June 21st when Emily and…

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First Ever Gene Therapy for Spinal Muscular Atrophy Approved by the FDA

According to a story from PR Newswire, the Novartis company AveXis recently announced that the US Food and Drug Administration (FDA) has approved Zolgensma, making it the first ever gene…

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Drink One For Dane: Dutch Bros Coffee Hosts 13th Annual Amyotrophic Lateral Sclerosis Fundraiser This Friday, May 10th

Dutch Bros Coffee is hosting their 13th annual fundraiser for amyotrophic lateral sclerosis (ALS) this Friday, May 10th, 2019. It's called "Drink One for Dane" in honor of Dane Boersma,…

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ISMRD International Conference for Glycoprotein Storage Diseases Coming This July

Upcoming Conference The International Society for Mannosidosis & Related Diseases (ISMRD) serves as an international patient advocate for those living with glycoprotein storage diseases. These include alpha-mannosidosis, fucosidosis, mucolipidosis type…

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Don’t Miss The Final Screening of “Take A Look At This Heart,” About Love and Intimacy in the Disabled Community

A rarely addressed subject that comes up in discussions about people with disabilities is the subject of romantic relationships, intimacy, and parenting. More than likely, a lot of day to…

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