rare disorder

Are You Living with an Undiagnosed Disease?

Posts Tagged ‘rare disorder’

Are You Living with an Undiagnosed Disease?

Are you or a loved one living with an undiagnosed disease? You’re not alone: thousands of Americans—maybe more—go undiagnosed every year, and millions are living with rare diseases. It can take up to 5 years for someone living with a rare disease to get diagnosed, and it takes more than 5 years for 15% of…

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#NSGCGenePool Second Annual Tweetchat

The National Society of Genetic Counselors (NSGC) has launched the second year of its NSGC Digital Ambassador Program. This program highlights advocates and providers in the genetics field who raise awareness about the role of genetic counseling and promote their shared interest across their networks. The group consists of 15 influencers, including our President/CEO, Ellen Matloff,…

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Rare Disease Day 2018

Rare Disease Day is an opportunity to raise awareness for 7,000+ rare diseases and the 30 million Americans who are affected by a rare disease(s). The theme for this year’s Rare Disease Day is “Research” and the important role that patients play in gaining an understanding of rare diseases and developing innovative treatments or cures. This…

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Genetic Counselors and You Webinar Series: Rare Diseases

The National Society of Genetic Counselors (NSGC) has introduced a new webinar series, “Genetic Counselors and You” hosted by genetic counselors from a variety of fields. Webinars are live and the recording can be accessed later if you miss the streaming. Registration is free and open to the public. The most recent webinar, “Rare Disease:…

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Rare Disease Day 2017

Did you know 1 in 10 people in America have a Rare Disease? Individually, Rare Diseases are scarce, but together they are actually quite common with 30 million Americans having a Rare Disease. More than half of those living with a Rare Disease are children…and about 30% of these children will not live to see their…

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Rare Disease Day 2016!

Did you know 1 in 10 people in America have a Rare Disease? That means 30 million Americans have a rare disease. February 29th is the rarest day of the year and appropriately marks Rare Disease Day worldwide. Events sponsored by NORD, the National Organization for Rare Disorders, are held throughout the world. These events…

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