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The FightEDS Team
- Sep 7, 2018
- 4 min
The 4 Essential Elements of your vEDS Care Team
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
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FIGHT vEDS Team
- Nov 13, 2017
- 3 min
Congress Attempts to Alter the Orphan Drug Tax Credit
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
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FIGHT vEDS Team
- Dec 14, 2016
- 1 min
Acer Therapeutics Obtains Exclusive License to Celiprolol Study Data
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
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