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illustration of different people wearing face masks

illustration of different people wearing face masks

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4y

The Hardest Parts of Rare Disease Life During COVID-19

For all of us, the COVID-19 pandemic is unlike anything we’ve witnessed before. COVID-19 is a new-to-humans coronavirus that can cause severe respiratory infection as well as a variety of other symptoms. Many of those in the rare disease community are already familiar with taking health precautions, like self-isolating or stocking up on medications. Unfortunately, [...]

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#Mightyheart #empower #AmbassadorEhlersDanlosSyndrome #AmbassadorRaredisease #Awareness #EhlersDanlosSyndrome #RareDisease #Proclamation #Biologydept #Buffalostate #PatientAdvocates

So I was honored by the town I live in, Cheektowaga NY. I took this Picture with a #Mightyheart I got at #NORDLRL confrene. I loved your booth and I love to spread awareness SO thi is me with #Buffalostate new head of the #biology dept. We met to discuss the conference at #GlobalGenes and the Proclamation as well as Graduate School.

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Stephanie Forman

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chromosaldeletion 6y

Where is everyone? #GlobalGenes #2018GGSummit

This year was my first time attending the Global Genes Rare Summit and all I can wonder coming out of the summit is where are all the groups and non-profits. It seemed to me that this is the place to be for the most cutting edge information, a great way to learn and a great way to network but I could only find one other #chromosaldeletion group there. Where is everyone? Why don't people want to expose themselves to learn the most they can from others in the rare disease community. Where are my other chromosomal deletion groups? Are you out there?

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Mother hugging son

Mother hugging son

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Duchenne Muscular Dystrophy

8y

FDA Approves New Duchenne Muscular Dystrophy Drug After Earlier Controversy

Article updated Dec. 13, 2019. In 2016, an advisory panel to the U.S. Food and Drug Administration (FDA) voted against approving Sarepta Therapeutics’s latest drug, eteplirsen, to treat Duchenne muscular dystrophy. But in a win for the rare disease community, the FDA approved eteplirsen anyway, causing a major upheaval at the FDA. On Dec. 12, 2019, Sarepta [...]