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Ehlers-Danlos National Foundation
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And don't forget, early registration for our own conference continues until May 6 — Hilton Americas, Houston, Texas — July 10–12! http://www.ednf.org/conference
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For the first time, researchers have permanently cured a genetic disease in an adult animal by editing the responsible gene. "In this study [doi:10.1038/nbt.2884], researchers attacked a disease called hereditary tyrosinemia, which stops liver cells from being able to process the amino acid tyrosine. It is caused by a mutation in just a single base of a single gene on the mouse (and human) genome, and prior research has confirmed that fixing that mutation cures the disease. The problem is that, until now, such a correction was only possible during early development, or even before fertilization of the egg. An adult body was thought to be simply too complex a target."
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EDS UK are so proud to announce our first ever kids and teens exclusive EDS Summer Camp. We will also be offering ten free scholarships, based on financial eligibility.
Dates - Sunday 17th August - Friday 22nd August 2014.
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"In the study, researchers evaluated blood samples from patients with POTS and also from healthy individuals. They found evidence of antibodies in blood samples from patients with POTs that bind to receptors on cells regulating vascular tone and to other receptors on cells involved in the regulation of heart rate."
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Inspire's profile photoJason Bonar's profile photo
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"I have been living with Ehlers-Danlos Syndrome my whole life, and over the last eight months I have become significantly more unwell, developing Postural Orthostatic Tacychardia Syndrome and Mast Cell Activation Disorder (both related to my underlying connective tissue disorder). The sudden apparition of these two new illnesses really threw me for a loop." http://www.huffingtonpost.co.uk/natasha-lipman/rare-diseases-day_b_4858076.html
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Have them in circles
158 people
Callie Steenstra's profile photo
Pixi Sara's profile photo
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Those who are silent are often in the most pain. Please notice them and be kind to them, if you can. Sometimes the simplest thing can matter so much. Thank you.
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Please be gentle with each other; who knows how each of us got where we are? One can make absolutely the best decision at every step along the path, and still find oneself lost.
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Early registration is now open for the EDNF Conference [July 10-12, Hilton Americas Hotel in Houston]! Information and link at http://www.ednf.org/conference
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Sit for a moment, and thank yourself for getting this far. Despite the challenges, here we are. Thank you.
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Have them in circles
158 people
Callie Steenstra's profile photo
Pixi Sara's profile photo
Lindsey Dalton's profile photo
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Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266