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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