Clair Francomano MD | Ehlers Danlos Syndrome: Genetics and Multi-Disciplinary Management | 2016

  Рет қаралды 2,257

The ILC Ehlers Danlos & Chronic Pain Foundation

The ILC Ehlers Danlos & Chronic Pain Foundation

3 жыл бұрын

Presented at the 2016 Annual ILC Ehlers Danlos Conference
Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.

Пікірлер: 4
@quinn2014
@quinn2014 2 жыл бұрын
She's my doctor and she's awesome
@daniellenelson2433
@daniellenelson2433 2 жыл бұрын
I just had my genome sequenced to see if I had EDS. I have several mutations for dermatosporaxis, progerid, and vascular type.....however it says the variant is either "benign" or "uncertain." How do we know for sure that these variations are not pathogenic?
@KMx108
@KMx108 2 жыл бұрын
If it's "uncertain" you have to wait for science to figure things out. I've been told to have your data run through the database after at least a year or more has passed in order to see if there are any new discoveries that are relevant to you. Some labs will do this for you once for free. Others will charge a fee. I've got some VUS's I'm eager to know about, too...
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