Organizational Groups?

Does anyone know of any groups - medical organizations, etc that are into promoting Alopecia at a really organized level? Typically, this isn't seen unless there is a celebrity or something that really hits the masses, but I'm wondering if there is something else that could work to bring awareness. Personally, I would have not known about this if it weren't for the personal situation.

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Permalink Reply by rj, Co-founder on September 13, 2009 at 3:17am
What about NAAF?
Permalink Reply by Rose K on September 13, 2009 at 3:35pm
Check out the National Alopecia Areata Foundation (naaf.org). They've been at the forefront of Alopecia Areata research, support, education etc. for over 28 years. NAAF has done enormous outreach via TV, radio, print etal to educate people about AA. I've had AA since I was a baby & involved w/NAAF since their beginning. Good luck.
Permalink Reply by Rose Marie' on September 13, 2009 at 3:45pm
Hi

I also think Naaf would be the place. :)

Rpsy
Permalink Reply by Carolyn Ferrie on September 15, 2009 at 9:50am
Really I don't understand why there isn't hardly any awareness of this disease, I never hear it mentioned anywhere only in here when I come in, this is the only place you can come to talk about it, where I live, there are no groups, NOTHING and I never hear a sound about the disease, hear about everything else, raising money for other diseases but WE are never mentioned.I wonder WHY this is.I don't understand it at all.I WISH someone would come to our aid and help us out with out expenses for wigs and everything else.And GROUPS , we need groups so we can talk to real people about out feelings and frustrations with all this.Why are We being neglected and no one seems to care about OUR disease.JUST getting more and more frustrated all the time.
Permalink Reply by Georgie on September 16, 2009 at 12:00am
I didn't learn of NAAF until I lost my first patch of hair. I found NAAF online about a year ago. So, for someone relatively new to AA (2.5 years now), there isn't anything out there about it....unless you look hard. My GP didn't even know what was going on with my hair loss. She was flipping through a book trying to find out what it was. Getting to a dermatologist was the answer. How could a regular doctor NOT know what AA was by looking at my head? They don't even know. I used to live in the Bay Area prior to living in Portland, OR. Never heard of NAAF.....

I hope that we can make more of a presence in the future and educate people better. It will take time.

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