June 29, 2019

On Tuesday, June 25th, the U.S. Food and Drug Administration ("FDA") responded to the New Drug Application that Acer Therapeutics submitted to bring celiprolol (under the brand name Edsivo) to the U.S. as a treatment for vascular Ehlers-Danlos Syndrome ("vEDS"). In the...

May 16, 2019

In April 2019, an observational study of vascular EDS was published in the Journal of American College of Cardiology (link). The good news is that the multi-pronged approach that researchers are using at Hôpital Européen Georges Pompidou in Paris is having a meaningful...

November 29, 2018

Recent vascular EDS literature estimated the average life expectancy at 51 years(1). While innovative technologies like gene editing and CRISPR-Cas9 have us optimistic for a vEDS cure, they are still in their infancy.  What can be done to extend life expectancy in vEDS...

September 7, 2018

When I was first diagnosed, like most people I knew nothing about vascular Ehlers-Danlos. Similarly, many of the doctors who first diagnose vEDS aren't experts either. I learned quickly that establishing the right network around me - both for personal support as well a...

August 9, 2018

I have a confession to make. I've been diagnosed with vascular Ehlers-Danlos for 6 years, but last month was the first time I met another vEDS patient face-to-face. I could make a list of reasons why it took so long, but ultimately the biggest reason was fear. To...

July 23, 2018

As our subscribers saw in our recent post, the University of Washington is hosting a meeting of the vEDS Collaborative on July 27, 2018. For those registered to participate via video or phone, we wanted to share a brief post to let you know what to expect. For those wh...

July 3, 2018

What’s in a name? Those of you who visited our site this week may have noticed a “little” change. After almost a year of being known as FIGHT EDS, we’ve officia

June 12, 2018

One of the most challenging aspects of suffering from a rare disease can be the feeling of isolation associated with it. Many patients with vascular EDS have n

May 25, 2018

Version 2.0 of FightEDS provides even more information about vascular Ehlers-Danlos syndrome for patients and their familes

April 26, 2018

On January 31st we published a blog post regarding the vascular EDS collaborative survey— an anonymous survey for patients with a clinical diagnosis of vascular Ehlers-Danlos syndrome. This was sponsored by the University of Washington and the Vascular Ehlers-Danlos Co...

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