On Tuesday, June 25th, the U.S. Food and Drug Administration ("FDA") responded to the New Drug Application that Acer Therapeutics submitt...

In April 2019, an observational study of vascular EDS was published in the Journal of American College of Cardiology (link). The good news i

Recent vascular EDS literature estimated the average life expectancy at 51 years(1). While innovative technologies like gene editing and ...

When I was first diagnosed, like most people I knew nothing about vascular Ehlers-Danlos. Similarly, many of the doctors who first diagno...

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 anothe

As our subscribers saw in our recent post, the University of Washington is hosting a meeting of the vEDS Collaborative on July 27, 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 FIGH

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

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

On January 31st we published a blog post regarding the vascular EDS collaborative survey— an anonymous survey for patients with a clinica...

As many of you are aware, FightEDS has been working closely with the University of Washington to further research in vascular Ehlers-Danlos

On November 2nd, 2017 the House Ways and Means Committee released a draft of the Tax Cuts and Jobs Act. The proposal has created a stir ...

Advice from Benjamin Franklin - how to use prevention and these five tips to better manage vEDS and improve longevity.

Acer Therapeutics Inc., a pharmaceutical company based in Cambridge, MA recently signed an agreement with the Greater Paris University Ho...