CONNECT: Pain Awareness Month, Zebra Strong Tour, and more! | The Ehlers-Danlos Society | 11 September 2018 - FibroFlutters Patient Advocacy Organisation

Including >>>

September is Pain Awareness Month

90% of EDS patients live with some form of pain, but all experience this pain in a different way. Follow us on social media throughout the month for information, discussion, and support on the many aspects of EDS and HSD pain.

#myEDSHurts & #myHSDHurts

Becoming Zebra Strong: The Ehlers-Danlos Society Tour USA 2018

Join Lara Bloom, International Executive Director of The Ehlers-Danlos Society, on a special screening tour of “Issues With My Tissues” hosted by our US Affiliates from Providence, Rhode Island to Los Angeles, California. All events are free and open to the public.

My Pain is Real

A #myEDS story by Julie F.

“I cried all the way home. I wasn’t crazy, I wasn’t exaggerating. My pain was real and there was a reason for it.”

FREE Webinar next Wednesday

Dr. Petra Klinge will host a webinar Wednesday, September 19th at 4 PM Eastern: “Understanding Neurological Manifestations of EDS” You MUST sign up to attend this webinar. A recording will be available on our website and YouTube page after the webinar is concluded.

Ghent Patient Day: Tools for managing EDS in a world of challenges

Our Ghent conference is right around the corner! Register now for EDS/HSD Patient Day in Ghent, Belgium on 30 September.

Ehlers-Danlos Society Learning Conference Australia

Space is limited! Register today to reserve your spot for our Australia Conferences! Conferences will be held in Sydney on 7-8 December and Perth on 10-11 December.

Read all the above via the following link >>>

CONNECT: Pain Awareness Month, Zebra Strong Tour, and more!

Why not visit The Ehlers-Danlos Society website to discover a whole lot more to like and read as well as the choice to opt-in for their their regular CONNECT newsletter >>>

www.ehlers-danlos.com/

First International ‘patient-registry’ for Ehlers-Danlos syndromes

The hope is that this Ehlers-Danlos syndromes patient registry over time will help researchers Worldwide advance the understanding of EDS, HSD, and related disorders:

Map the experiences of those living with Ehlers-Danlos syndromes (EDS) and related disorders globally
Facilitate research into the frequency of comorbid conditions associated with the various types of EDS and HSD.
Enable the gene search for hypermobile EDS and hypermobility spectrum disorders
Discover new forms of EDS/HSD and ascertain the relationships between EDS/HSD and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, autonomic disorders