Copyright 2011, All Rights Reserved, EDS Network C.A.R.E.S., Inc.
web site by ~ Lynn Sanders
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This page was last updated: August 2, 2015
Connective Tissue Disorders
Clinical and Molecular Manifestations of Heritable Disorders of
     Connective Tissue

                  For More Information
Please Call: (410) 350-7391

Email: sloperlj@mail.nih.gov

Prinicipal Investigator:
Dr. Nazli McDonnell, M.D., Ph.D
Role of Smooth Muscle Cells In Vascular Ehlers-Danlos Syndrome

Dr. Dianna M. Milewicz MD PhD
Dr. Amy Reid MD PhD
Melanie Pepin, MS, CGC
Genetic Counselor
(206) 543-5464

Email: mpepin@u.washington.edu
Dr. Dianna Milewicz
Head Circumference Growth in Children With Ehlers-Danlos Syndrome Who Develop Dysautonomia Later in Life
("POTS" -- Postural Orthostatic Tachycardia Syndrome)Later in Life -- a Retrospective Analysis

              New Study - June 2011
Read More About Dr Hal Dietz EDS Research - Click Here

Ehlers Danlos Syndrome Network C.A.R.E.S. Foundation we are currently funding our first EDS research project. So far we have given $75,000 towards this research. Every dollar that we raise for research, only goes for EDS research. Everyone who helps run this foundation are all volunteers.

No paid staff... 
We are working hard so we can be
"One step closer to a cure!"

If you would like to donate for our EDS Research Fund  http://www.ehlersdanlosnetwork.org/donations.html
Dr. Hal Dietz
Vascular Fundus Changes in Patients With High Probability of Chronic Cerebrospinal Venous Insufficiency (CCSVI)

The investigators propose that evidence of chronic cerebrospinal venous insufficiency (CCSVI) may be evident in the vasculature of the fundus. The investigators will be examining fundi of multiple sclerosis patients and Ehlers-Danlos patients to see if evidence of CCSVI can be found in these patients.

EDS Network C.A.R.E.S. Foundation is happy to announce that Dr. Diana Driscoll will be joining our Medical Advisors Board. We are happy to have Dr. Driscoll join our team of doctors. Dr. Driscoll just came out with this new EDS study. If you are interested in participating, please call the contact number. Thanks for joining EDS Network CARES Foundation, Dr. Driscoll!
Leistritz DF, Pepin MG, Schwarze U, Byers PH

June 1, 2011
Do you suffer from the effects of EDS and POTS (dysautonomia)? Ehlers-Danlos Syndrome Network CARES is excited and proud to announce the release of "The Driscoll Theory -- Part 1" -- the ground-breaking research of Dr. Diana Driscoll. Finally, EDS/POTS patients have some answers and new treatment options.
To download the publication and to print copies for your doctors, please click the link to the left: The Driscoll Theory-Part 1. As a patient, a doctor (on disability) and a mom
of affected children, Dr. Driscoll has devoted the last 7 years of her life to understanding
why EDS/POTS patients are so ill. Today, we thank her. To participate in Dr. Driscoll's ongoing trials please check out our Research Tab or her website  at Prettyill.com.
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Purdue Pharma - February 2012

Purdue tests oxycodone on children for
new version of drug - Currently recuiting participants    Ages: 6 years old - 16 years old
2012 - Update on the Smooth Muscle Cells In Vascular Type - Next Page Click Here