Concerns about privacy from the National Rosacea Society

[Ken C from Philadelphia]

I recently wrote the National Rosacea Society about a package that was delivered to me from a drug company. Apparently the National Rosacea Society is giving out their mailing list to various drug companies. I was not happy with this especially since I could not find any information on their website saying what their privacy policies are.

Has anyone else received samples from drug companies? By the way, the National Rosacea Society has yet to reply to my questions regarding this. The message I sent them is below.

Thanks,
Ken

quoted text --

I am a member of your organization and recently was
surprised by a package delivered to me from Beiersdorf Inc. on behalf of Eucerin. The package was addressed using an address that I only used with your organization so there is no doubt how this pharmaceutical company obtained my name. There was no mention in the letter inclosed in the package on how my address was obtained.

I see no privacy notices on your website so I can not check if you state that you will or will not give or sell my private medical information to pharmaceutical companies or other businesses. Do you plan on distributing my information to other businesses?

This could have been handled simply by Eucerin giving you the samples (and paying for postage) and your organization sending them out under your name.

Could you please reply with your policies on your mailing list use?

[Brady Barrows]

Ken,

You are one of the very few who have criticized the NRS for any of its activities. Most rosaceans continue to support the NRS and donate to its rosacea research. One of the good things the NRS does is support rosacea research. However, 60% of its money is spent on two private contractors, Glendale Communications Group, Inc., and an affiliate of Glendale, Park Mailing & Fullfillment, Inc., which is owned by Sam Huff, the President of the NRS.

There is a non profit organization concerned about the privacy of its members and the policy is available for your reading:

http://www.irosacea.org/legal.php#privacy

The Rosacea Research & Development Institute is a 501 (c)(3) non profit organization made up entirely by volunteer rosaceans. There is no other active approved non profit organization approved by the IRS like it. There is no indication that the NRS is formed by those who suffer from rosacea. There are few critics of the NRS except me. I have written an editorial about the NRS in my new book, Rosacea 101 in Appendix F. You can read the synopsis of my editorial at this url:

http://www.rosaceans.com/html/nrs.html

The RRDi hasn't engaged in any rosacea research yet, nor published very much about rosacea, but hopefully, in the future, will do just that. This is a slow process.

Ken C from Philadelphia wrote:

I recently wrote the National Rosacea Society about a package that was delivered to me from a drug company. Apparently the National Rosacea Society is giving out their mailing list to various drug companies. I was not happy with this especially since I could not find any information on their website saying what their privacy policies are.
Has anyone else received samples from drug companies? By the way, the National Rosacea Society has yet to reply to my questions regarding this. The message I sent them is below.
Thanks,
Ken
quoted text --
I am a member of your organization and recently was
surprised by a package delivered to me from Beiersdorf Inc. on behalf of Eucerin. The package was addressed using an address that I only used with your organization so there is no doubt how this pharmaceutical company obtained my name. There was no mention in the letter inclosed in the package on how my address was obtained.
I see no privacy notices on your website so I can not check if you state that you will or will not give or sell my private medical information to pharmaceutical companies or other businesses. Do you plan on distributing my information to other businesses?
This could have been handled simply by Eucerin giving you the samples (and paying for postage) and your organization sending them out under your name.
Could you please reply with your policies on your mailing list use?

[karl]

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