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 now? Look no further than Marfan Syndrome, another connective tissue disorder like vEDS. In 1972, the Marfan Syndrome average life expectancy was 48 years(2). Over the last three decades, Marfan Syndrome life e

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 as medical support is absolutely critical. Despite the importance of developing the right team of doctors, too many vEDS patients do not have a Care Team that makes them feel comfortable. At this summer's vEDS Co

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

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 in the rare disease community because the impact it has on a decades-old tax credit intended to incentivize development of rare disease treatments. This post explains what’s making the rare disease community anxious and what our vEDS community can do about it. History of the Orphan Drug Act and Orphan Drug Tax Credit: Prior to the 1980’s few

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 Hospitals AP-HP to gain exclusive rights to a clinical study that the hospital did of celiprolol's impact on vEDS. This study was conducted in Europe and has been well known within the vascular Ehlers-Danlos community for years. Celiprolol is a generic drug in Europe and Canada and although proven safe around the world, it's not yet FDA approv