a few concepts:
NAME: NADA--National Association for Dupuytrens Awareness

goals: to get together with other sufferers and share information.

to hear authoritative guest speakers

to learn more about insurance matters

to attempt to spread the word that dupuytrens doesn't have to necessarily be left alone, but can be preemptively treated.


Just a few thoughts...Any more people showing an interest?

Hi cureall,

instead of starting a new initiative why not use the existing one and get this moving through the US Dupuytren Foundation http://www.dupuytrenfoundation.org/ ? The Foundation works patient oriented, is well connected with physicians and is not restricted to just one cure but is dedicated to help patients with Dupuytren's.

Wolfgang

cureall:

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a few concepts:
NAME: NADA--National Association for Dupuytrens Awareness

goals: to get together with other sufferers and share information.

to hear authoritative guest speakers

to learn more about insurance matters

to attempt to spread the word that dupuytrens doesn't have to necessarily be left alone, but can be preemptively treated.


Just a few thoughts...Any more people showing an interest?

Flora,

we had discussed inviting patients to the Miami conference, at least those being members of the Society or the Foundation. But there were legal concerns to expose patients to treatments that are in research and experimental. By common sense I had thought that it would have been sufficient to warn interested patients about this and have them sign their agreement to it. But obviously that's not that easy. Therefore I was the only patient there and I could only attend because I was co-organizing it.

We are planning to have this conference every 5 years, thus the next one will be in 2015. It will be in Europe at a location still to be determined. We will certainly try to include a special session for patients but I am pessimistic whether patients will be able to attend the whole conference. That's a shame because afterwards they can buy the proceedings anyway but that seems to be the way it is. There will be a Dupuytren symposium in Europe this year, in November, but that will be organized by Pfizer and Pfizer told me that I will not be able to attend for the same reason.

In Germany we have started patients' meetings in several cities. So far the responses are OK but not overhelming (15 participants at the July meeting in Munich, 3 in Berlin). But we are on the learning curve. "'The only magic is brute consistence, persistence, and attention to detail" (Tom Peters, "In Search of Excellence"). We are also in the process of setting up a British Dupuytren's Society. In the US the Dupuytren Foundation could maybe help organizing such meetings and get doctors to participate, especially when you are considering a country-wide event. For local meetings the easiest way is probably to start something yourself in your neighborhood and see what happens.

Wolfgang

flojo:

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Wolfgang,
When there was the Dupuytren's conference in Florida, I wanted to go as a patient, but there were no patient meetings/workshops. Was there any discussion about having something for patients?
Is there another Dups conference planned? This would be the setting that I would like to see something set up for patients. I'd be glad to volunteer to work at such an event, but I'm not the organizer type.
I am interested in getting together with others. So far, I have gotten together with individuals I met on this site who live close enough for us to meet. I also have met 2 people in my town and one, I'm happy to say, I was a conduit for her to have NA instead of surgery!

Flora

Count me in! I like the idea of piggybacking it with the doctor's conference, but different cities is interesting also. I'm just VERY interested in swapping notes with everyone in person!

Can you count me twice????

If there is any way possible, I'll be at a West Coast meeting for patients. Like the idea of one on each coast to start. Then maybe we could have regional ones and from there determine smaller regions or cities.

In California, we'd need a Northern Calif and a Southern Calif group at some point. There are doctors that I believe would try to schedule to meet with us. Although I haven't mentioned it to him, I believe Dr. Denkler would try to meet with us. He is in NorCal.

Where I live, an Inland Empire meeting would be a location, however we are between San Diego and Los Angeles. To begin with, I'd drive.

Maybe it is one of those things where they say, "If you set it up, they'll come." I'm sure most people would need several months to make plans. I'll see if I can get a free place to meet in the San Diego/Escondido area. I'm not one to do organizing of the event however.

Flora