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Permalink Reply by Billie on July 14, 2008 at 1:52pm

Thank you. I am in the process of filling out the 2nd tier information pack( with blood work) and scheduling time with my dermotologist LOCALLY who has treated me since the onset of this over 17 years ago, to participate with me instead of traveling to Houston, TX which I can not afford at this time.

ANY ideas or comments are welcome.

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Permalink Reply by kastababy on July 14, 2008 at 8:10pm

I had my dermatologist (who has been treating me since I was 12) do the bloodwork and the interview locally in her office. The appointment took about 2 hours and she didn't even charge me my copay. Make sure when you set the appointment with your doctor to ask her to waive the copay or any costs associated with the visit for the Registry. Most, if not all doctors who have alopecia patients are waiving the charges. Good luck!!

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Permalink Reply by kastababy on July 14, 2008 at 8:06pm

I've been on the registry since it was created, and I went onto the Second Tier in January. I haven't heard anything back from them since that time, but thanks for posting the number -- I can call them tomorrow and ask them if there is any other information I need to give them.

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Permalink Reply by JeffreySF on July 15, 2008 at 12:37pm

I signed up a few months back.
I havent heard anything either.

Jeff

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Permalink Reply by Billie on July 16, 2008 at 11:17am

Kerri,
Thank you so much for your input here as well as otherwise!
It means a great deal to those of us who suffer this dreadful diease to find a cure or at least a correlation to what the causes are.

Again- a BIG thank you.

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Permalink Reply by Rose Marie' on July 20, 2008 at 6:19pm

Hi
I tried to join a few years ago but is only available to those in the USA. Is that still the case??

Rosy

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