Parents of Children with Ehlers-Danlos Syndrome
25 Members
This online group serves Parents of children living with Ehlers Danlos Syndrome from across the country. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.
Live Yes! Connect Groups for JA Parents provide local connections, education and empowerment for parents and caregivers with children living with rheumatic disease. JA Parents come together for professional and volunteer-led sessions on a variety of topics and group activities as it relates to raising a child with arthritis.
Participants gain skills to advocate for their child, help their child develop self-management skills and discover strategies for daily living. These groups are part of an expanding range of Arthritis Foundation resources that provides personalized help & support to parents who have a child/teen with a childhood rheumatic disease.
This Live Yes! Connect Group is led by a parent with 2 daughters with EDS Hypermobility Type and is looking to connect with other parents whose child/children have EDS.
Upcoming Events
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Tuesday, January 21st, 20258:00 PM ET1h 30m
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You will need to register for the event on the Parents of High School Students with JA Connect Group page to receive the link (https://connectgroups.arthritis.org/events/event-detail?eventid=216772). You do not need to “Join” this group to register and attend the event. https://connectgroups.arthritis.org/events/event-detail?eventid=216772 Atlanta, Georgia Get Directions
- 0 people attending
Parents of All JA Students,
Join us on Tuesday, Jan. 21st at 5pm PT/ 6pm MT/ 7pm CT/ 8pm ET for resolutions, resources and cold weather necessities. Learn about the importance of self-care for caregivers as we share our best coping mechanisms for ourselves. We will also share more information about the new layout for National Live Yes Connect Groups and how we can help you every day.
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
This meeting is open to all Parents of JA Students (Parents of Children with Ehlers-Danlos Syndrome, Elementary School, Middle School, and High School). If we need to talk in smaller groups, we will use the Zoom Break Out function.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. You will need to register for the event on the Parents of High School Students with JA Connect Group page to receive the link (https://connectgroups.arthritis.org/events/event-detail?eventid=216772). You do not need to “Join” this group to register and attend the event.
Being on video or having a Zoom account is not required. A confirmation email with the Zoom link will be sent upon registration. Please check your spam folder if you do not receive the registration confirmation. Please plan to log in a few minutes early.
We look forward to seeing you soon!
- Event List
-
Tuesday, January 21st, 20258:00 PM ET1h 30m
-
You will need to register for the event on the Parents of High School Students with JA Connect Group page to receive the link (https://connectgroups.arthritis.org/events/event-detail?eventid=216772). You do not need to “Join” this group to register and attend the event. https://connectgroups.arthritis.org/events/event-detail?eventid=216772 Atlanta, Georgia Get Directions
- 0 people attending
Parents of All JA Students,
Join us on Tuesday, Jan. 21st at 5pm PT/ 6pm MT/ 7pm CT/ 8pm ET for resolutions, resources and cold weather necessities. Learn about the importance of self-care for caregivers as we share our best coping mechanisms for ourselves. We will also share more information about the new layout for National Live Yes Connect Groups and how we can help you every day.
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
This meeting is open to all Parents of JA Students (Parents of Children with Ehlers-Danlos Syndrome, Elementary School, Middle School, and High School). If we need to talk in smaller groups, we will use the Zoom Break Out function.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. You will need to register for the event on the Parents of High School Students with JA Connect Group page to receive the link (https://connectgroups.arthritis.org/events/event-detail?eventid=216772). You do not need to “Join” this group to register and attend the event.
Being on video or having a Zoom account is not required. A confirmation email with the Zoom link will be sent upon registration. Please check your spam folder if you do not receive the registration confirmation. Please plan to log in a few minutes early.
We look forward to seeing you soon!
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Connect Groups - National - Ehlers-Danlos Syndromes JA Parent
Comment
Comments [7]
Hi. I just joined this group. I am wondering if you happen to have a recording of the meeting that you refer to in the discussion below about EDS kids going to college and anxiety. These are just the kinds of things I was hoping to learn about from others. Thanks!
Our Zoom link for tomorrow's meeting is -
https://arthritisfoundation.zoom.us/meeting/register/tZYof-ygrj8oH9KkWq2Z-b6pCDmteVQD0ygG
There will be a short registration before you enter the Zoom.
Our Zoom link for tomorrow is -
https://arthritisfoundation.zoom.us/meeting/register/tZItduqprzstHdLciHy5lwaGy9MEgAvffwpf
There will be a short registration form before you enter the Zoom.
Our meeting is coming up on Sunday. Hope to see you there.
The Zoom link for the meeting is -
https://arthritisfoundation.zoom.us/meeting/register/tZ0ucuqvqjIsG9y9roPjPfQk21VL-m5zXBQL
There will be a short registration form for you to fill out once you log in before you join the meeting.
Laurel
I am planning our next meeting. I was thinking maybe in August. Let me know if there is something special you want to talk about or a specific subject expert you would like to see. Our last two were fabulous on going to college with EDS and on our kids and their anxiety.
I usually have meetings on Sunday evenings. If there is a day that would be better for you please send me a message as well. If enough of you like another day of the week better, I will work on moving the day for the next meeting.
Hi everyone. My 27 year old has a number of conditions, including a so far undiagnosed connective tissue disorder. Our best guess right now is hypermobile EDS. Glad to join the group!
Hi! My daughter and I are new here. We joined on the advice of our rheumatologist and are sharing one account for the moment. (She's only 17.) We both have Ankylosing Spondylitis and Hypermobile EDS. She also was diagnosed with celiac disease at 8 years old.
We come from a huge family, and nearly every one of us has some form of AS/hEDS/Crohn's/celiac. (Talk about terrible genes! Lol.) This creates a large support network for us, but Brooke is looking to branch out and meet new people like herself, especially as she has finally figured out that she wants to become a pediatric Occupational Therapist to help kids who are going through the same difficulties she has faced. I also need to connect with other parents like myself.
So...yeah. We're here and can't wait to get involved!