Tag Archive: vEDS

Let’s Chat: vEDS Parents Virtual Support Group

Join our wonderful Society team for our one hour Let’s Chat: vEDS Parents virtual support group. This group takes place once per month and is a wonderful place to connect with other parents living with vEDS or parents of children living with vEDS.   Notes: attendees who wish to participate in the discussion must join
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Let’s Chat: vEDS Virtual Support Group

Join our wonderful Society team for our one hour Let’s Chat: vEDS virtual support group. This group takes place once per month and is a wonderful place to share stories and experiences with others who will understand.   Notes: attendees who wish to participate in the discussion must join the meeting through the Zoom platform.
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Let’s Chat: vEDS Parents Virtual Support Group

Join our wonderful Society team for our one hour Let’s Chat: vEDS Parents virtual support group. This group takes place once per month and is a wonderful place to connect with other parents living with vEDS or parents of children living with vEDS.   Notes: attendees who wish to participate in the discussion must join
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Let’s Chat: vEDS Virtual Support Group

Join our wonderful Society team for our one hour Let’s Chat: vEDS virtual support group. This group takes place once per month and is a wonderful place to share stories and experiences with others who will understand.   Notes: attendees who wish to participate in the discussion must join the meeting through the Zoom platform.
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Let’s Chat: vEDS Parents Virtual Support Group

Join our wonderful Society team for our one hour Let’s Chat: vEDS Parents virtual support group. This group takes place once per month and is a wonderful place to connect with other parents living with vEDS or parents of children living with vEDS.   Notes: attendees who wish to participate in the discussion must join
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vEDS clinical trial announced

Acer Therapeutics Plans Clinical Trial for EDSIVO™ (celiprolol) in Vascular Ehlers-Danlos Syndrome 

The pharmaceutical company, Acer Therapeutics Inc. (Nasdaq: ACER), focus on the acquisition, development, and commercialization of therapies for serious rare and life-threatening diseases with significant unmet medical needs, announcing this week that they are planning a pivotal clinical trial in patients with COL3A1+ vascular Ehlers-Danlos syndrome (vEDS) with the treatment EDSIVO™ (celiprolol). Vascular EDS is a
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Clayton

I just try to live a normal life

I had my first heart attack in 2003, but with minor damage and no explanation as to why I had it. In 2015, my second heart attack was discovered by a dissection in one of my vessels. This would open up a study in Halifax Nova Scotia, with many doctors, and with the results of
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vEDS clinical trial announced

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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