Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Hi, Can anyone tell me about the studies with NIH? I have been reading various posts on here and assume that there is a study on periodic fever syndromes. Is it free or does insurance cover it? We have medical insurance, but after almost a year's worth of detailed tests, the company is starting to drag their heels on paying the claims. What are the requirements to be accepted to the study? Process? Thanks for any help as we are new to this! Misty Alnahaoi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Thank you Danni, Well what I have mostly heard is the top NIH officer complaining about the drastic budget cutbacks initiated by the current administration. This is really good news indeed. I have surfed the NIH website before, but found so many trials going on in so many different institutes there that I was not able to locate any specific department or individual that I thought I might contact. If you could please provide me with a specific contact , I would like to contact them myself. Is there a central point where NIH is coordinating all these efforts on Still's. And by the way, do you feel from your contact with NIH that there will be some significant breakthrough in the not to distant future? Cort --- Blondedolphin172@... wrote: > > Cort, > ? I was seen and evaluated at NIH last year. They > are doing alot of research on stills. It was a very > extensive testing procedure and evaluation by many > different doctors and departments like immunology, > endocrinology, rheumotology and hemotology. You can > go to the NIH website and look to see all the trials > going on. So before you assume that there is no > research being done since you were there in the > 1970's, you should look at the NIH site first.? I > was suppose to start a trial medication but was > diagnosed with lymphoma and was unable too due to > having chemotherapy. > > Danni > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals.yahoo.com/tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Thank you Danni, Well what I have mostly heard is the top NIH officer complaining about the drastic budget cutbacks initiated by the current administration. This is really good news indeed. I have surfed the NIH website before, but found so many trials going on in so many different institutes there that I was not able to locate any specific department or individual that I thought I might contact. If you could please provide me with a specific contact , I would like to contact them myself. Is there a central point where NIH is coordinating all these efforts on Still's. And by the way, do you feel from your contact with NIH that there will be some significant breakthrough in the not to distant future? Cort --- Blondedolphin172@... wrote: > > Cort, > ? I was seen and evaluated at NIH last year. They > are doing alot of research on stills. It was a very > extensive testing procedure and evaluation by many > different doctors and departments like immunology, > endocrinology, rheumotology and hemotology. You can > go to the NIH website and look to see all the trials > going on. So before you assume that there is no > research being done since you were there in the > 1970's, you should look at the NIH site first.? I > was suppose to start a trial medication but was > diagnosed with lymphoma and was unable too due to > having chemotherapy. > > Danni > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals.yahoo.com/tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Thank you Danni, Well what I have mostly heard is the top NIH officer complaining about the drastic budget cutbacks initiated by the current administration. This is really good news indeed. I have surfed the NIH website before, but found so many trials going on in so many different institutes there that I was not able to locate any specific department or individual that I thought I might contact. If you could please provide me with a specific contact , I would like to contact them myself. Is there a central point where NIH is coordinating all these efforts on Still's. And by the way, do you feel from your contact with NIH that there will be some significant breakthrough in the not to distant future? Cort --- Blondedolphin172@... wrote: > > Cort, > ? I was seen and evaluated at NIH last year. They > are doing alot of research on stills. It was a very > extensive testing procedure and evaluation by many > different doctors and departments like immunology, > endocrinology, rheumotology and hemotology. You can > go to the NIH website and look to see all the trials > going on. So before you assume that there is no > research being done since you were there in the > 1970's, you should look at the NIH site first.? I > was suppose to start a trial medication but was > diagnosed with lymphoma and was unable too due to > having chemotherapy. > > Danni > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals.yahoo.com/tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 It is really easy to find out what research NIH is doing on stills for us layman people. If you want to know what clinical trials are being done on Still's disease at NIH all you have to do is first go to www.nih.gov . Once on the site type in adult onset stills disease and all the trials that are being done will be shown. If you see any that you are interested in you can then contact NIH directly and they can connect you with the appropriate department. I hope this does not confuse you. By the way, If the American healthcare system is so bad why would you not want to find research studies where you are?? Danni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 It is really easy to find out what research NIH is doing on stills for us layman people. If you want to know what clinical trials are being done on Still's disease at NIH all you have to do is first go to www.nih.gov . Once on the site type in adult onset stills disease and all the trials that are being done will be shown. If you see any that you are interested in you can then contact NIH directly and they can connect you with the appropriate department. I hope this does not confuse you. By the way, If the American healthcare system is so bad why would you not want to find research studies where you are?? Danni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 It is really easy to find out what research NIH is doing on stills for us layman people. If you want to know what clinical trials are being done on Still's disease at NIH all you have to do is first go to www.nih.gov . Once on the site type in adult onset stills disease and all the trials that are being done will be shown. If you see any that you are interested in you can then contact NIH directly and they can connect you with the appropriate department. I hope this does not confuse you. By the way, If the American healthcare system is so bad why would you not want to find research studies where you are?? Danni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Danni, Thank you, I sent an email to their project development team asking if they would be interested in contacting me for further follow up. As for the rest, you would have had to have gone through my experiences with the stateside medical community and my experience as a financial executive at two major pharm firms to better understand my frustration with the system. Everyone has different experiences in life and I do think things have improved there. For me, I am quite sure that I could not have survived. The number of SD patients who have had to move overseas to survive and are now aware of this website apparently is a group of one, me. So I don't expect very many to understand except for those like the one living in the UK, who I don't believe has lived for a long time in the U.S., to understand. One has to have had a basis for comparison to understand the difference. If one has only tasted vanilla ice cream all of their life, then of course that has to be the greatest flavor on earth, that is until one's tried caramel almond. Regards, Cort --- Blondedolphin172@... wrote: > > It is really easy to find out what research NIH is > doing on stills for us layman people. If you want to > know what clinical trials are being done on Still's > disease at NIH all you have to do is first go to > www.nih.gov . Once on the site type in adult onset > stills disease and all the trials that are being > done will be shown. If you see any that you are > interested in you can then contact NIH directly and > they can connect you with the appropriate > department. I hope this does not confuse you. By the > way, If the American healthcare system is so bad why > would you not want to find research studies where > you are?? > > > Danni > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals.yahoo.com/tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Danni, Thank you, I sent an email to their project development team asking if they would be interested in contacting me for further follow up. As for the rest, you would have had to have gone through my experiences with the stateside medical community and my experience as a financial executive at two major pharm firms to better understand my frustration with the system. Everyone has different experiences in life and I do think things have improved there. For me, I am quite sure that I could not have survived. The number of SD patients who have had to move overseas to survive and are now aware of this website apparently is a group of one, me. So I don't expect very many to understand except for those like the one living in the UK, who I don't believe has lived for a long time in the U.S., to understand. One has to have had a basis for comparison to understand the difference. If one has only tasted vanilla ice cream all of their life, then of course that has to be the greatest flavor on earth, that is until one's tried caramel almond. Regards, Cort --- Blondedolphin172@... wrote: > > It is really easy to find out what research NIH is > doing on stills for us layman people. If you want to > know what clinical trials are being done on Still's > disease at NIH all you have to do is first go to > www.nih.gov . Once on the site type in adult onset > stills disease and all the trials that are being > done will be shown. If you see any that you are > interested in you can then contact NIH directly and > they can connect you with the appropriate > department. I hope this does not confuse you. By the > way, If the American healthcare system is so bad why > would you not want to find research studies where > you are?? > > > Danni > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals.yahoo.com/tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Danni, Thank you, I sent an email to their project development team asking if they would be interested in contacting me for further follow up. As for the rest, you would have had to have gone through my experiences with the stateside medical community and my experience as a financial executive at two major pharm firms to better understand my frustration with the system. Everyone has different experiences in life and I do think things have improved there. For me, I am quite sure that I could not have survived. The number of SD patients who have had to move overseas to survive and are now aware of this website apparently is a group of one, me. So I don't expect very many to understand except for those like the one living in the UK, who I don't believe has lived for a long time in the U.S., to understand. One has to have had a basis for comparison to understand the difference. If one has only tasted vanilla ice cream all of their life, then of course that has to be the greatest flavor on earth, that is until one's tried caramel almond. Regards, Cort --- Blondedolphin172@... wrote: > > It is really easy to find out what research NIH is > doing on stills for us layman people. If you want to > know what clinical trials are being done on Still's > disease at NIH all you have to do is first go to > www.nih.gov . Once on the site type in adult onset > stills disease and all the trials that are being > done will be shown. If you see any that you are > interested in you can then contact NIH directly and > they can connect you with the appropriate > department. I hope this does not confuse you. By the > way, If the American healthcare system is so bad why > would you not want to find research studies where > you are?? > > > Danni > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals.yahoo.com/tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
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