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Doctor Education Project Update

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I posted a little while ago about sending informational brochures on POTS to Doctors of your choice. The feedback was positive, however, the response was a bit less than hoped for. 8 members sent requests, with a total number of 22 Doctors to reach out to. Thanks to those of you who sent requests - mailings will begin soon.

It was suggested that a cover letter be included with the brochure addressing some important issues and we agree. We've come up with a letter which will be printed on DINET letterhead and included with each mailing. I'm really happy with it and hope you will be too. I hope this inpires more people to participate. You can get information on how to send a request from the DINET homepage. I'll post another update in the future. Thanks!

Here's what the letter says:

Dear Physician,

Greetings from the Dysautonomia Information Network. We are a nonprofit organization whose mission is to raise awareness about dysautonomia. One of the more common forms of dysautonomia is a debilitating condition called Postural Orthostatic Tachycardia Syndrome (POTS). POTS is observed primarily in young women, but also affects men, children, and older women.

Because many physicians are not familiar with POTS, numerous POTS patients wait for months or years to be properly diagnosed. For some patients, the symptoms of POTS can mimic anxiety disorders, which has frequently led to inaccurate psychological diagnoses, while leaving a very real physical condition untreated. This has been a source of great frustration and discouragement for many dysautonomia patients.

We are reaching out to physicians with the hope of raising awareness of this condition. Enclosed please find our educational brochure about POTS. For more information, please visit www.dinet.org. We also have an educational documentary, “Changes,” available online at


If you have any questions, or if we can be of assistance to you, please contact us. We can be reached by email at staff@dinet.org or through the mail at PO Box 147, Slayton, MN 56172.

Thank you for your time and for the care you give to patients.


The Dysautonomia Information Network

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I think this is a great project Naomi, thank you for working on it! Could you please send me a few brochures? As I'm in The Netherlands I think it would be easier to send them myself (and cheaper!). I will send you my address via pm if you think this a good idea.

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Wow Naomi! This is awesome, i missed your first post..i have to gather some addresses but i def. Know a few doctors that found this condition interesting but were unaware of it. Should i pm u the addresses and names? And are u sending everywhere in the US. Im in virginia. =)

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Looks great! Please keep reminding people too as this is a busy time of year with end of school activities in many parts of the country and graduations etc. May be missed by many but doesn't mean they aren't interested. :) May just need to be reminded.

Thanks for doing this Naomi!!

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