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Celeste
Unregistered User
(12/31/02 1:10 am)
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Lanie's Response at Yahoo
From: "soficrow <soficrow@h...>" <soficrow@h...>
Date: Mon Dec 30, 2002 11:42 pm
Subject: Re: ONE NIH OFFICE STATES FMD NOT RARE
ALRIGHT!!! Thank you Yvonne and Susan for sharing this
information... (and Yvonne especially for writing the right person
and asking the right question! ...and won't you please come back?!?)
This is one of the BEST and most honest responses about FMD I ever
have seen from any source! I think our work and debate here is
paying off!!!
- The "Genetic and Rare Diseases Information Center" acknowledges
that FMD is NOT rare! This is absolutely essential to generate
research and funding.
If we keep at it, the other bureaucracies will catch up. THEN, we
can get some action on this disease. YES!!!
This letter came from the "Information Specialist (at the) The
Genetic and Rare Diseases Information Center ...established by the
National Human Genome Research Institute and the Office of Rare
Diseases at the National Institutes of Health." - which must be the
final authority on the classification, right?
...and just to warn you (I love you all, respect your work highly,
and am VERY grateful for all your hard work, and really do not mean
to be a pain) ...but, my next campaign will be to get everyone to
admit FMD can infect the entire vascular system - not just the
arteries... and, that it's proven to be progressive... and, that
using FMD-diseased kidneys for transplant is NOT okay... (I'll stop
now)
I am pumped - I think this is EXCELLENT news!!!
Thank you, thank you, Lanie
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Susan
Unregistered User
(1/9/03 8:16 am)
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about the classification of FMD as a rare disorder (cont)
Subj: [Fibromuscular_Dysplasia] FMD NOT A RARE DISEASE
Date: 1/8/03 10:09:09 AM Eastern Standard Time
From: susangould@web-unwired.net
Reply-to: Fibromuscular_Dysplasia@yahoogroups.com
To: Fibromuscular_Dysplasia@yahoogroups.com
Sent from the Internet (Details)
As promised, I followed up on Yvonne Watkins' question to the NIH about the classification of FMD as a rare disorder. I spoke with the Office of Rare Diseases (ORD) at the NIH. They were extremely cooperative and helpful.
According to the ORD, FMD is not a rare disease in of itself.
Because of the nature of FMD and the many different medical
specialties involved its classification as a rare disease allows for broader allocation of research funds. Most of the information found re: FMD was found during a related study. (i.e. vascular,
nephrology) The NIH is not currently sponsoring research specifically targeting FMD because no organization or institution has "officially" requested funding for FMD specific research.
The ORD did suggest that we contact our physicians and ask them if they or anyone they know has a research grant, which has been awarded to them by the NIH. If so, the recipient could request an extension of the grant to included FMD specific research. This would apply to any teaching facility like clinics, hospital or universities.
When asked if being a rare disease had less sponsorship appeal to potential research sponsors the answer is no. As long as you can provide the numbers supporting the community affected with FMD that is all you need for sponsorship. The pharmaceutical companies are interested in how many people have it, not necessarily what "it" is or "its" classification. Same argument goes for coalition groups, corporations and research facilities.
Ultimately, the decision to have FMD removed from the rare diseases list is up to the NIH. At this time, they don't think it is advisable. There are too many opportunities and special services available to rare disease groups and by removing FMD from the list; any future organization attempting to solicit
research grants would have a greater chance under these special programs.
One example of these programs and special grants is the Rare Diseases Act (H.R. 4013) and the Rare Diseases Orphan Product Development Act (H.R. 4014) . If memory serves me correctly, this is the legislation that got us interested in organizing in the first place. Under this program, all grant money is provided by the NIH's Office of Rare Disease..
It was also recommended that as a new organization, we use as many resources as possible in helping get our feet off the ground. The ORD strongly recommends that a new organization affiliate itself with a "parent" organization to guide them through there first few years. NORD was highly recommended by the NIH for FMD's objectives.
I am sorry it took me so long to get back to all of you with this. My life got into a spin for a few days after the holidays. If you have any further questions about this let me know, I'll see if I can
help.
Susan
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