Boston Walk to Support Marfans/EDS Research

By  John Lynds, Times Staff: Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome. “Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart.  When the doctor told me we would […]

New Federal Rules Make it Hard to Get an Opioid Refill for Pain Sufferers

By Felice J. Freyer GLOBE STAFF   . Jonathan Rodis takes his hydrocodone pills sparingly, only when the pain becomes unbearable. He doesn’t like the way the drug fogs his brain. And lately, he also needs to conserve — because new federal rules make it hard to get a refill. . . . Rodis has […]

Join the New England/MA Ehlers-Danlos Initiatives Facebook Group

The EDS New England/Massachusetts Support Group, members of the EDS Awareness support group network, have created a new Facebook Group and released a new survey.  Results from both the New England survey and the EDS Awareness survey survey will be included in upcoming reports. Thank you for your participation in these important projects, EDS Awareness […]

Free Webinar: “Update on Complications and Rare Forms of EDS” – Recording Available

Watch the recording of this free webinar. Dr. Joan Stoler presents “Update on Complications and Rare Forms of EDS”.

Being Your Own Advocate for Your Rare Health Condition

By Jonathan Rodis.
Edited by Sue Hagen.

Being your own advocate not only improves the quality of your care in the future, but also provides your local caregivers, physicians and hospital staff a better understanding.

Lack of Clinical Understanding about Hypermobility Conditions and Treatment

By Bill Schu. Many doctors do not understand the clinical significance of joint hypermobility.  This has a major impact on accessing appropriate treatments. Mobility is great. Hypermobility? Less great. In the joints, hypermobility leads to musculoskeletal pain – and often times, lots of it. A recent review in the Journal of Pain Research outlined several […]

Free Webinar: “Connective Tissue Disorder Research” by Dr. Hal Dietz – Recording Available

Watch this FREE educational video!   _ Dr. Hal Dietz presents “Connective Tissue Disorder Research”   Sponsored by www.bodysupportstore.com    TOPIC:  “Connective Tissue Disorder Research”   PRESENTER: Dr. Hal Dietz _ _   Click here for the recording of this presentation Click here for the slides used in this presentation  __ About our speaker: Dr. Hal Dietz – Dr. Dietz  is […]

Free Webinar: “Introduction to Ehlers-Danlos Syndrome” by Dr. Brad Tinkle – Recording Available

Watch this FREE video presentation! Dr. Brad Tinkle presents “Introduction to Ehlers-Danlos Syndrome”.   Sponsored by www.bodysupportstore.com     _  Click here for the recording of this presentation _  Click here for the slides used in this presentation _ To browse MORE VIDEO presentations by other EDS Experts – Click Here  (then select “previous page” to view more recordings.) _ About our […]