Archive for the ‘EDS Research’ Category

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British University Designs Physical Therapy Program for Hypermobility Syndrome

Posted on April 6, 2014

UWE Bristol is developing a promising PT program to help patients with Hypermobility Syndrome (JHS). “Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people affected by Joint Hypermobility Syndrome (JHS).” “Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people […]

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Hard Budget Choices for Research of Rare-Disease Cures

Posted on March 21, 2014

Difficult decisions need to be made on how to spend research money for “rare diseases”, such as Ehlers-Danlos Syndrome. This NIA study – which began in 2003 –  focuses on 5 disorders, including Ehlers-Danlos and Marfan syndromes. By AMY DOCKSER MARCUS BETHESDA, Md.—Last month, at the National Institutes of Health clinical center here, Sarah Kucharski and Fran […]

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Free Webinar: Dr. Chopra presents EDS Pain Management (Part 1 of 2)

Posted on March 18, 2014

EDS Awareness invites you to watch this FREE webinar presented by Dr. Pradeep Chopra on EDS Pain Management. (Part 1)  A recording is available for replay. Receive INVITATIONS for upcoming FREE webinars by signing up for the “FREE Report” on the homepage. Or click HERE.  CLICK HERE for the link to the recording of this webinar session.  CLICK HERE […]

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Dr. Brad Tinkle Appointed Medical Advisor for the Hypermobility Syndromes Association

Posted on February 3, 2014

Read this is an exciting announcement from the Hypermobility Syndromes Association!  We congratulate Dr. Tinkle and thank him for his exemplary & ongoing service to the EDS community! The HMSA is very pleased to announce that Dr Brad Tinkle has agreed to join the Hypermobility Syndromes Association as a Medical Advisor! Many of you will remember […]

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Fibrocell Science and Intrexon Expand Collaboration for Ehlers-Danlos Syndrome Research

Posted on January 20, 2014

Protein replacement therapies may offer hope to accelerate EDS research and development. This research will target the tenascin-X protein defect which is found in a subset of Ehlers-Danlos Syndrome patients. Fibrocell and Intrexon will endeavor to engineer autologous fibroblast cells genetically corrected to produce -tenascin-X (TN-X), a protein that is deficient in the connective tissue of a […]

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Canadian Ehlers-Danlos Doctor moves to the US

Posted on September 21, 2013

There are few doctors in Canada treating children with Ehlers-Danlos Syndrome.  Unfortunately there is now one less! By: jfrketich@thespec.com “A Hamilton neurologist who was one of the only doctors in Canada to treat children with Ehlers-Danlos syndrome has gone to the United States. Dr. Benedicto (Ben) Baronia’s last shift was Sept. 15 at McMaster Children’s Hospital, […]

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Baylor College of Medicine Receives Funds to Study Ehlers-Danlos Syndrome

Posted on August 15, 2013

A generous gift to Baylor College of Medicine will further Ehlers-Danlos Syndrome research. Bayan Raji Reporter-Houston Business Journal “Two philanthropic donors gifted $1 million to Baylor College of Medicine with the hopes researchers will be able to advance the study of a rare, incurable tissue disorder. Baylor geneticist Dr. Brendan Lee will use the gift from Pamela and David Ott to establish […]

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EDNF Presentation by Shane Robinson, Executive Director

Posted on August 5, 2013

By Diana Cleaveland, Watch this 4-part video series of a presentation given by Shane Robinson, Executive Director of EDNF, to the New England EDS Support Group on June 30, 2013. The topics include: the past and future goals of EDNF and the EDNF Conference held August 1 -3, 2013. Though the videos are fairly long, there is […]

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