To discuss the latest information about Ehlers-Danlos syndrome (EDS) and related disorders, patients and their families, scientists, and clinicians will convene in Paris from March 21-22 for the first European Learning Conference.
Presented by the Ehlers-Danlos Society, and held at the Hotel Mercure Paris Orly Rungis, the meeting will be divided into separate days for medical professionals and patients. All sessions will be in English, and translated into Spanish, French, German, Dutch, and Italian. The conference includes multiple question-and-answer periods.
On March 21, session topics for active healthcare professionals will include diagnosing EDS and hypermobility spectrum disorder (HDS), genetic testing in EDS, musculoskeletal concerns, and joint, bone and muscle issues in EDS. Other sessions include pharmacological and non-pharmacological pain management; the role of physical and occupational therapy in EDS and HSD; cardiovascular concerns; vascular problems in vascular (vEDS) and other types of EDS; other body systems; gastrointestinal concerns; anxiety disorders; and pelvic floor concerns in EDS and HSD.
Agenda topics for patients and their families on March 22 include hypermobile EDS (hEDS) and HSD, living with these disorders, rare types of EDS, living with arthrochalasia EDS, living with dermatosparaxis EDS (dEDS) and vascular EDS. Other topics to be discussed in the sessions include emergency situations in vEDS; living with vEDS; managing EDS and HSD; the mechanisms of pain; physiotherapy; holistic approaches to pain management; gastrointestinal problems; anxiety and depression; pelvic floor problems in HSD and hEDS; autonomic dysfunction; and headaches.
In addition, there will be a screening on March 22 for the international Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study, which seeks to identify genetic markers for hEDS. Those who have been diagnosed with hEDS and are interested in participating in the study should visit this site for more information or to apply. Recruitment will continue throughout 2020.
Conference attendees are invited on that same day to join Lara Bloom, president and CEO of the Ehlers-Danlos Society, for a free showing of “Issues With My Tissues.” The documentary follows Bloom’s journey as she trained to become the first EDS patient to walk the London Marathon. Bloom reached her goal in 2011, at age 31, despite never before in her life walking more than three miles at a time.
The film features interviews with healthcare professionals, EDS families, and those who have been misdiagnosed. Following the film – which is open to the public at no charge – Bloom will speak and answer questions. Register here for this or another screening.
The conference registration fee for medical professionals is €100 ($110 U.S.). Registration fees for patients and families are €75 ($82 U.S.) for adults; €68 ($75 U.S.) for students and those with disabilities; and €65 ($71 U.S.) for children ages 2-16. Babies and infants up to age 2 are admitted free of charge. Lunch is included.
The European Learning Conference is sponsored in part by the Association Francaise des Syndromes d’Ehlers-Danlos.
The Ehlers-Danlos Society is an international nonprofit organization dedicated to patient support, research, advocacy, and increasing awareness for EDS, HSD, and related disorders.
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