Throughout a lot of posts, you’ll see me mention NAAF. Here is an explanation of who they are, the different things they offer and what they strive to do.
NAAF stands for National Alopecia Areata Foundation, and their mission statement is “NAAF supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata.”
My experience with NAAF includes
- Locating a support group near me. This group had a few members and I met some really amazing women. Time and location were against us so months later the group disbanded, but I’m still happy I found it in the first place.
- I learned more of what Alopecia was. After I was diagnosed I was very very confused and so was my mother. My dermatologist at the time really didn’t know too much about Alopecia, so he wasn’t able to answer the questions I had. The internet wasn’t as large as it is now, so I was able to locate NAAF and had them mail me information. NAAF is how I understood what I had.
NAAF has a lot of connections with researchers, physicians, and scientists in the advancements in treatments and finding a cure. They have a research part of their website that really breaks down what’s currently happening in Alopecia studies, and gives people who have been diagnosed a way to participate. I have done a few in the past and will try to do more in the future.
There are a few areas of support on the NAAF website. These include a directory on finding a support group, getting information about local awareness events, and being a part of the mentoring program. In the past I know they had other types of support options, but I think over time they were faded out for various reasons. The lack of online support is one of the top reasons I chose to create the Forum page. I think people talking to each other in an informal setting is great, and can be really helpful.
I would definitely suggest heading over to NAAF’s website and see all of the information they have!