Welcome to the

Parents of Children with Ehlers-Danlos Syndrome Connect Group

Parents of Children with Ehlers-Danlos Syndrome
24 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

  • Sunday, May 5th, 2024
    7:00 PM ET
    1h 30m
  • Virtual Event
  •   0 people attending
Parents of Children with Ehlers- Danlos Syndrome - EDS Awareness Month

So much has changed in the world of EDS. It is quite amazing. I was in a minor car accident a month ago and one of the firemen that came knew well what EDS was. That would have not happened when my daughters were first diagnosed. The care that our children are getting is changing. This meeting let’s chat about how things are going as we meet with providers and specialists: what is working, and what concerns we still have. Let’s meet on Sunday, May 5th at 7 pm ET / 6 pm CT / 5 pm MT / 4 pm PT for our next event.

After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings. 

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. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early. 

We look forward to seeing you soon!
 

 This is a Virtual Event. 
Facilitator(s)
Members
  • Event List
Arthritis Foundation Event
  • Sunday, May 5th, 2024
    7:00 PM ET
    1h 30m
  • Virtual Event
  •   0 people attending
Parents of Children with Ehlers- Danlos Syndrome - EDS Awareness Month

So much has changed in the world of EDS. It is quite amazing. I was in a minor car accident a month ago and one of the firemen that came knew well what EDS was. That would have not happened when my daughters were first diagnosed. The care that our children are getting is changing. This meeting let’s chat about how things are going as we meet with providers and specialists: what is working, and what concerns we still have. Let’s meet on Sunday, May 5th at 7 pm ET / 6 pm CT / 5 pm MT / 4 pm PT for our next event.

After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings. 

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. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early. 

We look forward to seeing you soon!
 

 This is a Virtual Event. 
Facilitators [1]
Members [24]

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Connect Groups - National - Ehlers-Danlos Syndromes JA Parent

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Comments [6]
Laurel A
Laurel A
December 2, 2023 - 5:58 PM

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.

Laurel A
Laurel A
August 19, 2023 - 10:28 PM

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. 

Laurel A
Laurel A
April 29, 2023 - 4:07 AM

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 

Laurel A
Laurel A
April 16, 2023 - 10:18 PM

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.    

 

Rebekah D
Rebekah D
January 17, 2023 - 11:20 PM

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!

Brooke D
Brooke D
January 5, 2022 - 7:25 PM

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!