(If you'd like your event added, please contact us at email@example.com)
SKYPE MEET UPS! Virginia/DC/MD SKYPE meet ups! If you are interested in participating in these, please email me. We are coordinating our next meeting.
THE DYSAUTONOMIA SOS CALENDAR of global events for the region is HERE:
Join a Support Group:
There is a detailed listing of regional support groups HERE.
The Hampton Roads and Richmond Dysautonomia SOS Group
Little, but we are growing!!! JOIN US!!!
The DC/VA/MD Facebook CLOSED Group
Anyone can join, would love to see this group get more active! Please join!
Dysautonomia SOS Support Group: An open Facebook group
For Parents WITH POTS/DYSAUTONOMIA: A closed Facebook Group
FOR PARENTS OF TEENS, contact Ellen Kessler via Facebook to be added to a private Parents of Teens with POTS group. (Be sure to message her and tell her your situation, and you found her via this site, since it is a private/secret group.)
FOR KIDS AND TEENS:
If your teen is interested in meeting other teens, DYNAkids has an annual summer retreat (in Northern Virginia!) the first week in July. Check the Dyna website for information about their teen support forum. They have "interesting" rules and policies regarding the kids, be sure to read through before enrolling.
Starbright World (by Starlight Childrens Foundation): An adult monitored site for chronically ill kids ages 13-20 with lots of ways to participate. A great site with loads of ways to connect with other kids dealing with being a teen and sick.
START A REGIONAL GROUP!
Are you looking to start a support group with resources in your area?
If you are serious about spreading the word, raising awareness, and helping compile data on doctors treating POTS in your area - contact me!
The main goal of having regional chapters is to provide links to local doctors, support materials relevant to your area, and possibly hosting or promoting local awareness events in your region.
We need to spread the word about Dysautonomia, POTS, diagnosis, treatment, and support - and what better way to do that than to work TOGETHER?!?!
I really believe the more local groups we can get going, the more doctors will have to learn about POTS, and we can reduce the diagnosis times, improve treatment options, and help others suffering from this illness.