FIGHT vEDS TeamJun 29, 20193 minThe FDA rejects celiprolol - how should we interpret the news?On Tuesday, June 25th, the U.S. Food and Drug Administration ("FDA") responded to the New Drug Application that Acer Therapeutics submitted to bring celiprol...
FIGHT vEDS TeamMay 16, 20193 minNEW STUDY: vEDS patients are living longer, but unclear what role celiprolol playsIn April 2019, an observational study of vascular EDS was published in the Journal of American College of Cardiology (link). The good news i
John D.Nov 29, 20185 minLonger Life with vEDS: A Lesson from Marfan SyndromeRecent vascular EDS literature estimated the average life expectancy at 51 years(1). While innovative technologies like gene editing and CRISPR-Cas9 have us ...
The FightEDS TeamSep 7, 20184 minThe 4 Essential Elements of your vEDS Care TeamWhen 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 exper...
John D.Aug 9, 20183 minA vEDS Confession...the 1st time I met another patientI 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
The FIGHT vEDS TeamJul 23, 20183 min2018 vEDS Collaborative Meeting: What to ExpectAs 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...
The FIGHT vEDS TeamJul 3, 20182 minHow much does the "v" mean to vEDS?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
FIGHT vEDS TeamJun 12, 20185 min7 Lessons from the vEDS Facebook CommunityOne of the most challenging aspects of suffering from a rare disease can be the feeling of isolation associated with it. Many patients with
The FightEDS TeamMay 25, 20182 minFight EDS Version 2.0 Website Now Available!Version 2.0 of FightEDS provides even more information about vascular Ehlers-Danlos syndrome for patients and their familes
The FightEDS TeamApr 26, 20181 min300+ Patients Respond to University of Washington Research SurveyOn January 31st we published a blog post regarding the vascular EDS collaborative survey— an anonymous survey for patients with a clinical diagnosis of vascu...
FIGHT vEDS TeamJan 31, 20182 minThe University of Washington and FightEDS ask patients to set the research agendaAs many of you are aware, FightEDS has been working closely with the University of Washington to further research in vascular Ehlers-Danlos
FIGHT vEDS TeamNov 13, 20173 minCongress Attempts to Alter the Orphan Drug Tax CreditOn 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 ...
FIGHT vEDS TeamAug 29, 20174 min5 Tips from Benjamin Franklin for vascular EDSAdvice from Benjamin Franklin - how to use prevention and these five tips to better manage vEDS and improve longevity.
FIGHT vEDS TeamDec 14, 20161 minAcer Therapeutics Obtains Exclusive License to Celiprolol Study DataAcer Therapeutics Inc., a pharmaceutical company based in Cambridge, MA recently signed an agreement with the Greater Paris University Hospitals AP-HP to gai...
