E-News May 30, 2006
Success at the AUA!
First off we would like to thank all of you who participated in the Speak Out on our site. Your voices were heard! The video power point with your comments brought a lot of people to the booth. Their reaction was just as we had anticipated. They listened, asked questions, and offered assistance.
The plenary session on Peyronie's Disease was attended by approximately 3,000 physicians and as our website was flashed on the screen, the pencils came out. This session made the front page in the AUA daily news and we will have a reprint of the article up on the site soon. Our booth, never really quiet, became very busy after that.
The podium session on PD where our abstract was presented garnered the same results. Shortly after we were contacted by many physicians wanting to get involved in the Physicians Directory, and we had some interesting requests from the international membership. We have been asked to have the site translated into five different languages, and will be pursuing this with vigor. Perhaps the most telling comment was from Prof. C.M, Booth from the UK, his comment was "physicians alone cannot get enough support for PD issues, neither can patients by themselves, but what you have done by working together can and will".
Our abstract power point presentation, presented by Dr. Chris Nelson, will be available on our site soon. Be sure to look at the statistics on PD related depression…interesting stuff indeed and it is these figures that gained the attention of the pharmaceutical industry involved with PD research and development in particular. As a whole they all expressed an interest in and requested information about the association. One of the things we talked about was giving you direct access and information about new product development and clinical trial participation. We will be involved in further negotiations and working out the process in the near future.
We had the privilege of presenting your case to the Sexual Medicine Society (SMSNA) and the results there were also exciting. Together we will be exploring a collaborative partnership. Their focus this year is "Reach the Patient and Educate the Physician". We have been invited to attend the SMS convention in Las Vegas in November this year. We are exploring ways that their information and activities regarding PD will be made available to you directly via our website. This collaboration will go a long way to helping us achieve our goals.
One of the highlights of our networking efforts with other Non Profits at the convention was the invitation to take part in a patient/physician panel on PD at the NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases) next year. This panel explores what needs to be done concerning PD and the public. They have also asked us to send them more information about PD so they can update their current data and include us in their referral database.
The Men's Health Network is also interested in establishing a firm link with us. We will be submitting an article on PD and how it affects men's health. We will be joining their Non Profit network, and brining you updates on what is being done on Capitol Hill in regard to Men's Health issues. This will give you the opportunity to become involved directly with advocacy from the privacy of your computer room!...Their function is to network with the lawmakers that can affect us, they are the men's health advocates on the Hill and are looking forward to presenting the information about PD and our association. Men's Health Week is in June so we will be bringing you more information about what is going on.
The first textbook on Peyronie's Disease edited by Dr Laurence Levine with contributions from the world's experts on PD was on display and will be available for delivery from Humana Press in September. One of the things we did was talk with the publisher and gain permission to pre sell through a link on our site. This will be up soon. While this book is written for physicians and will be sold world wide, it is written it in such a way that it is an excellent reference for the PD patient also. We did a quick review of it and can hardly wait to get our own copy.
Thanks again to all of you who contributed to our efforts. That 2,500 pound gorilla that has been standing in our way just got moved over a little.
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