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08/26/2011 12:32
cureall 
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08/26/2011 12:32
cureall
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idea
Convention for we Dupuytren sufferers wherein we invite the doctor from Germany who can look at us and we talk about insurance issues etc...
If we all chipped in I think it could happen...What do you think?
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08/26/2011 23:40
Cyclist 
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08/26/2011 23:40
Cyclist
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Re: idea
Hi Cureall
You should email Dr Siegenschmiedt - he's actually expressed his interest in doing so to me both times I visited his clinic in Germany. I believe he's interested in exactly this type of conference in the US and maybe in Aust
Good luck!
Di
cureall:
Convention for we Dupuytren sufferers wherein we invite the doctor from Germany who can look at us and we talk about insurance issues etc...
If we all chipped in I think it could happen...What do you think?
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08/29/2011 22:22
cureall
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08/29/2011 22:22
cureall
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Re: idea
The doctor e-mailed me back and said he'd be interested. But it sounds like he's more interested in meeting with other doctors. He cannot perform medicine in the U.s....so IS ANYONE OUT THERE INTERESTD IN PURSUING A CONVENTION OF DUP SUFFERERS?
The point of the meeting would be to: collect info on RT doctors, share experiences personally, brainstorm, go over insurance issues, learn more about our problem etc...Perhaps the doctor from Germany could come and talk to us too.
IS THERE AN INTEREST IN THIS?
CUREALL
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08/29/2011 22:32
cureall
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08/29/2011 22:32
cureall
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Re: idea--doctor's email:
Generally this appears to be a very interesting option and I would not hesitate if there aren't possible legal and other aspects to consider:
(1) I am not allowed to practice medicine in the USA;
(2) I know that radiotherapy of non-malignant disorders is not fully accepted in the USA for legal reasons;
(3) An educational program related to American physicians interested in this disease complex and sufferers should be organized as "background" event.
An excellent person with knowledge who could serve as a host would be Dr. Tripuranemi from LaJolla. He has been responible for ASTRO , the American Organisation for Radiation Oncologist; he would be helpful to get the information around to other doctors with radiotherapeutic background; Dr. Eaton from the Hand Center would also of great value as he knows all minimal invasive and open surgical procedures.
I will be helpful to set up a program which contains theoretical and practical aspects...
With best regards, sincerely Yours,
Prof. Dr. M. Heinrich Seegenschmiedt
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08/30/2011 12:50
Cyclist
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08/30/2011 12:50
Cyclist
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Re: idea
Hi Cureall
It's not a bad idea to 'piggy-back' your consumer oriented forum onto a doctor-led conference, as Prof S. suggests. The doctors will attract the sponsorship to make a conference possible. Prof S. may not be allowed to practice in the States, but he could potentially provide advice to a selected group of patients, which would be great for follow-up visits for those who have already had treatment, or those considering it
Just a few thoughts
Di
cureall:
Generally this appears to be a very interesting option and I would not hesitate if there aren't possible legal and other aspects to consider:
(1) I am not allowed to practice medicine in the USA;
(2) I know that radiotherapy of non-malignant disorders is not fully accepted in the USA for legal reasons;
(3) An educational program related to American physicians interested in this disease complex and sufferers should be organized as "background" event.
An excellent person with knowledge who could serve as a host would be Dr. Tripuranemi from LaJolla. He has been responible for ASTRO , the American Organisation for Radiation Oncologist; he would be helpful to get the information around to other doctors with radiotherapeutic background; Dr. Eaton from the Hand Center would also of great value as he knows all minimal invasive and open surgical procedures.
I will be helpful to set up a program which contains theoretical and practical aspects...
With best regards, sincerely Yours,
Prof. Dr. M. Heinrich Seegenschmiedt
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08/30/2011 19:19
lori
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08/30/2011 19:19
lori
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Re: idea
I would love to go to a conference on this subject. I would imagine that even though he can't practice in the US, he could be a speaker or advisor. We could pursue seeing if there was such a thing as a treatment release that we could sign that would allow him to look at our hands and feet. I don't know if there is such a thing, but I would be willing to pursue this issue.
Let me know. Sounds interesting to me.
Lori
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08/31/2011 00:54
cureall
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08/31/2011 00:54
cureall
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Re: idea
so far, only you, me and cyclist have expressed an interest...I don't think three people would make a conference! I'm surprised more people haven't put in their two cents' worth on this subject. We need to make the medical community aware of Dup so that we aren't shuffled off to the wait and see category!
If there are others on this forum who would like to attend a conference on Dup and related diseases, Please express your interest here. I would be happy to do some work on this if the demand is there. Any other takers?
thanks!
cureall
HIFU is also an interesting prospect and perhaps the convention could address that issue as well.
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08/31/2011 07:36
spanishbuddha  Administrator
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08/31/2011 07:36
spanishbuddha Administrator
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Re: idea
Just want to make sure that you are aware that the proceedings of the conference organised by the society are available on the web site at http://www.dupuytren-online.info/dupuytren_conference.html
I am in UK so can't help but another comment in passing. I was treated this year with RT by Prof S in Hamburg so appreciate his skill, but would think a conference should encompass all aspects of symptoms, diagnosis, progresssion, treatment, other therapies, perhaps research, and not just RT. Just my 2c  I guess it depends on your goals.
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09/01/2011 16:04
debrr
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09/01/2011 16:04
debrr
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Re: idea
I am interested cureall!!! Count me in and let me know what I can do!
Debbie
so far, only you, me and cyclist have expressed an interest...I
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09/02/2011 01:49
cureall
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09/02/2011 01:49
cureall
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Re: idea
I think the purpose of our meeting in the U.S. would be primarily focused on the lay person sufferer. We would look at different therapies and insurance issues and have guest speaker/experts...Hopefully the doctor from Germany would come...and other doctors as well...
I would think we would need at least 10 interested people before it would be worthwhile and so far, I think we have 4...
AT this point, we need more people to enlist in this idea...
Any other takers?
thanks
cureall
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