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National - Ehlers-Danlos Syndromes JA Parent Connect Group

Yorba Linda, California
9 Members
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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

Angel Stadium of Anaheim 2000 E. Gene Autry Way Anaheim, California Get Directions
  • Sunday December 4th 2022
    12:00 AM
  • through
  • Sunday December 4th 2022
    12:00 AM
2022 Jingle Bell Run Orange County/Inland Empire

Get back to jingling and join the MOST FUN & FESTIVE holiday fun-run around – all to battle the #1 cause of disability!

Attend
View All Upcoming Events
Facilitator(s)
Laurel A
Laurel A
Members
Laurel A
Tiffany C
Tracy H
Tiffany C
Alanna C
Brooke D
Shannon Ragland L
Kristin H
Michelle P
  • Event List
Arthritis Foundation Event
Angel Stadium of Anaheim 2000 E. Gene Autry Way Anaheim, California Get Directions
  • Sunday December 4th 2022 12:00 AM
  • through
  • Sunday December 4th 2022 12:00 AM
2022 Jingle Bell Run Orange County/Inland Empire

Get back to jingling and join the MOST FUN & FESTIVE holiday fun-run around – all to battle the #1 cause of disability!

Attend
Facilitators [1]
Laurel A
Laurel A
Members [9]
Laurel A
Laurel A
Tiffany C
Tiffany C
Tracy H
Tracy H
Tiffany C
Tiffany C
Alanna C
Alanna C
Brooke D
Brooke D
Shannon Ragland L
Shannon Ragland L
Kristin H
Kristin H
Michelle P
Michelle P

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Connect Groups - National - Ehlers-Danlos Syndromes JA Parent

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Comments [1]
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!

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By taking part in the Live Yes! INSIGHTS assessment, you’ll be among those changing lives today and changing the future of arthritis, for yourself and for 54 million others. And all it takes is just 10 minutes.

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- Lead to more effective treatments and outcomes
- Develop programs to meet the needs of you and your community
- Shape a powerful agenda that fights for you

Now is the time to make your voice count, for yourself and the entire arthritis community. 

Currently this program is for the adult arthritis community.  Since the needs of the juvenile arthritis (JA) community are unique, we are currently working with experts to develop a customized experience for JA families. 

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