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Livi, July 15, 2013
Posted July 15, 2013
I know the DC group is active. Please remember that it is a patient run support group, so the person who would respond to you is juggling many o f the same symptoms as you. They do meet regularly so I would suggest just showing up at their next scheduled meeting. They often post on here and other sites when they have an upcoming meeting, often at the MLK Library in SE. Send me a personal message if you need help finding their next meeting date and I will try to find it for you.
Posted July 24, 2013
Here is their facebook link. I do not see that they have any upcoming meeting posted. I suggest trying facebook to see if you can gain any information.
It is definitely hard when a group is run by volunteers- people's lives get overlaoded sometimes. And we have a rare disease, so there are few options for us.
I hope you get some info and support.
Posted July 25, 2013
Sorry about that
Maybe you could consider starting something informal and posting a date/time. It can be hard to find a perfect fit since there are not many of us. Since you are in a metro area you may get some replies. If you build it they will come- so to speak.
Posted July 26, 2013
Posted August 16, 2014
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