Managing Daily Life with EDS & HSD
June 26-27, 2021
Community and Healthcare Professionals Event
Join us for our Virtual Summer Conference 2021, with leading expert presentations on Managing daily life with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Talks will discuss practical management advice, the latest research, and clinical understanding, and cover a wide range of topics around improving quality of life including:
- Complementary therapies
- Physical Therapy
- Movement therapy and Pilates
- Relationships and EDS and HSD
- Advocacy for and supporting children at school
- Managing pain and fatigue
- Anxiety and hypermobility
- Managing ADHD
- Working with your healthcare team
5.5 CME/CEU/CU Credits are available for Healthcare Professionals to claim for LIVE viewing of sessions 1, 2, 5, and 6.
Junior Zebras Program
We are delighted to announce a dazzling program dedicated to our younger members, our Junior Zebras! Experts from various disciplines will come together to share information and advice on how children and teenagers can manage daily life with EDS and HSD.
Saturday, June 26, 2021 – Junior Zebras: Kids (Ages 6-12)
Sunday, June 27, 2021 – Junior Zebras: Teens (Ages 13-18)
Please note: The Junior Zebras Program will not be translated live during the event, but all sessions will be translated afterward and made available to conference attendees.
A Virtual Event with Live Translations
This virtual event is suitable for the EDS and HSD community, their families and caregivers, and healthcare professionals. The agenda will be announced soon! We are delighted to be offering live translations during this event in English (original language), French, Italian, Spanish, Portuguese.
If you have questions about this event please email firstname.lastname@example.org
Junior Zebras: Kids and Teens Schedules
Kids Schedule (Ages 6-12) – Saturday, June 26, 2021
- 9:35 am -10 am Self Advocacy
- 10:05 am-10:30 am Physical Therapy and Exercise
- 11:35 am-12:00 pm Nutrition and Hydration
- 12:05 pm-12:30 pm Art, Music, and Coping
- 1:55 pm-2:20 pm Let’s Chat! Reflections from Today
Teens Schedule (Ages 13-18) – Sunday, June 27, 2021
- 9:35 am -10 am Tips and Tricks for Self-Managing Pain and Fatigue
- 10:05 am-10:30 am Deep Breathing Exercises and Other Ways to Manage Pain and Anxiety
- 11:35 am-12 pm Self Advocacy
- 12:05 pm-12:30 pm Nutrition and Hydration
- 1:55 pm-2:20 pm Art, Music, and Coping
- 2:25 pm – 3:00 pm Physical Therapy and Exercise
- 4:15 pm – 4:40 pm Let’s Chat! Reflections from Today
The Junior Zebras events will take place online, via Zoom. Zoom is an online platform to provide safe video and chat-based education and interactive workshops on computers, tablets, and smartphones. The Ehlers-Danlos Society Staff and approved experts will host the Junior Zebras events via Zoom and will provide a secure link and password to the participant’s Parent or Guardian to enable them to join the event. Learn more.
Enter Zebras Got Talent!
We are inviting all artists and creators to take part in the “Zebras Got Talent” virtual show, by submitting their original work!
Zebras Got Talent is an online exhibition that will showcase the creativity of those in our community. Your entries will be uploaded for conference attendees to view and vote for their favorite on our event app, Whova.
The theme for this exhibition is “Living with EDS or HSD,” and submissions could include a talent of your choice. We are delighted to feature a guest performance from The Voice finalist, Cami Clune, who also lives with Ehlers-Danlos syndrome.
Submissions could include a talent of your choice such as:
- Visual Arts
- Graphic Design
- Dramatic Arts
- Playing a musical instrument
- A Tik-Tok video
- Performing a Magic Act
- Stand-up Comedy
- Telling a story
- Show off your DJ skills
- Gymnastics Routine
- Creating an interactive Science Project
- Martial arts
- Lip-sync your Favorite Song
The three entries with the highest votes will receive the following prizes:
- The winner and the 2 runners up will have their entry published in our newsletter and on our social media channels
- 1st place WINNER will receive EITHER: a free pass to a virtual EDS Society event, or a 50% discount to an in person EDS Society event, valid for any event in 2021 or 2022.
- 2nd PLACE a 25% discount on any virtual or in person EDS Society event (adult or child), valid for any event in 2021 or 2022.
- 3RD PLACE will receive a 15% discount on any virtual or in person EDS Society event (adult or child), valid for any event in 2021 or 2022.
We can’t wait to see your talents and performances!
Please note: You must be registered to attend the Virtual Summer Conference to enter Zebras Got Talent.
Virtual Summer Conference 2021 Merchandise – Now Available to Order!
In support of improving patient care, Project ECHO® is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
AMA Designation Statement
Project ECHO® designates this live activity for a maximum of 5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Credit is applicable to specific presentations, indicated in the agenda above.
Project ECHO®, in compliance with the ACCME Standards of Commercial Support, requires anyone who is in a position to control the content of an activity discloses all relevant financial relationships they have had within the last 12 months with a commercial interest related to the content of the activity. The Planners and Presenters of this activity disclose that they have no financial relationships with any commercial interest. Professor Lara Bloom, Stacey Simmonds, Sacha Aziz, Dr. Alan Hakim, Shani Weber, Dr. Tina Wang, Dr. Fraser Burling, Dr. Jordan Tishler, Dr. Leslie Russek, Dr. Jane Simmonds, Jeannie Di Bon, Dr. Stephen Porges, Stephanie Carroll, Dr. Pradeep Chopra, Dr. Alan Pocinki. Dr. James Kustow.
About Aytu BioPharma, Inc.
Aytu BioPharma is a specialty pharmaceutical company with a growing commercial portfolio of prescription therapeutics and consumer health products. The company’s primary prescription products treat attention deficit hyperactivity disorder (ADHD) and other common pediatric conditions. Aytu markets ADHD products Adzenys XR-ODT® (amphetamine) extended-release orally disintegrating tablets (see Full Prescribing Information, including Boxed WARNING), Cotempla XR-ODT® (methylphenidate) extended-release orally disintegrating tablets (see Full Prescribing Information, including Boxed WARNING), and Adzenys-ER® (amphetamine) extended-release oral suspension (see Full Prescribing Information, including Boxed WARNING). The company’s other pediatric products include Karbinal® ER (carbinoxamine maleate), an extended-release carbinoxamine (antihistamine) suspension indicated to treat numerous allergic conditions, and Poly-Vi-Flor® and Tri-Vi-Flor®, two complementary fluoride-based prescription vitamin product lines containing combinations of fluoride and vitamins in various formulations for infants and children with fluoride deficiency. The company’s evolution has been driven by strategic in-licensing, acquisition-based transactions and organic product growth. As Aytu continues this trajectory, the company is building a complimentary therapeutic development pipeline that will address significant unmet needs. For more information, please visit aytubio.com.
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About DM Orthotics
We provide soft fabric orthoses to help adults and children with challenging conditions like EDS. Our orthoses help with pain management, postural realignment and reduce subluxation and dislocation through the strategic way our fabrics are manufactured, providing you with a product that helps improve daily life.
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