Tag Archive: vEDS

Clinical trial announced for vascular Ehlers-Danlos syndrome (vEDS).

Clinical trial announced for vascular Ehlers-Danlos syndrome (vEDS)

Specialty pharmaceutical company, Aytu BioPharma, announced this week that they will be conducting a pivotal clinical trial for the development of treatment for vascular Ehlers-Danlos syndrome (vEDS).  What is vascular Ehlers-Danlos syndrome?  VEDS is estimated to occur between 1 in 50,000 individuals to 1 in 200,000 and results from pathogenic variants in COL3A1, which is responsible for producing chains of
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Claudia sits in a hospital bed with wires attached to her chest

As I clung to life in the hospital, I was diagnosed with vEDS

This story was shared in Spanish, the English version has been translated and in the event of any discrepancies, the original version below with prevail.  I have always been the most vulnerable in my family, half of my life has been in hospitals and medical appointments, everything hurt and I was sick all the time. 
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Kaily's story

Advocacy became my biggest lifeline during my diagnosis journey

TW: Contains mention of suicide. For years, the struggle to find the words to raise awareness for my genetic condition, vascular Ehlers-Danlos syndrome (vEDS), has mimicked the years of working through speech therapy, as my family tried to decipher the tongue-tied soliloquy I called talking. A million details scrambled together, just enough to make it
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Celiprolol and vEDS

An update for the vEDS community: Celiprolol

The following notice is to bring you up to date on the interactions between Acer Therapeutics Inc. and the FDA to try to find a pathway to bring celiprolol to market in the US.  The following is from a summary of the actions and recommendations recently released by Acer.   Summary of statement On March 18, 2020,
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The Ehlers-Danlos Society launches vEDS ECHO

The Ehlers-Danlos Society is delighted to launch the new vEDS ECHO: a program led by Dr. Sherene Shalhub dedicated to increasing awareness and education in all aspects of diagnosis and management of vascular Ehlers-Danlos syndrome (vEDS).  VEDS ECHO is a revolutionary program that seeks to support health professionals around the world in caring for patients
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Our discovery of vEDS

Myself and my husband have our beautiful daughter, Effie. At one month old Effie started to vomit and sleep all day: we took her to the GP and hospital 17 times within the first 3 months of her life. One morning, 3am Effie woke up screaming, she had a seizure and turned stiff: we called
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