NORD anyone?

[EmersonAilidh]

The National Organization for Rare Diseases includes Lyme Disease but not P.A.N.D.A.S. How could we get on there??

[thereishope]

I've tried contacting them a few times. I never get a reply.

[Mary M]

I also contacted them and got no reply...

Mary

from Michigan

[EmersonAilidh]

How exactly would one get included? I mean, if someone were to email & get a response. Sorry y'all didn't get replies!

[Worried_Dad]

We joined NORD in the early days, when our son's diagnosis was Sydenham's chorea, which NORD did include in its list of rare disorders. To be honest, for our situation, it was pretty worthless. They had no useful resources for ARF or SC (less than I found for free on other sites) and no other SC members with whom we could compare notes.

 

Just our experience... but in hindsight, I wouldn't bother joining again.