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Celeste
Unregistered User
(12/31/02 1:08 am)
Reply
ONE NIH OFFICE STATES FMD NOT RARE - by Susan Gould
From: "susan gould "
Date: Mon Dec 30, 2002 9:28 pm
Subject: ONE NIH OFFICE STATES FMD NOT RARE


Yvonne Watkins forwarded the following message to me to
share with the group.

The message is a response to Yvonne 's question: "Is FMD a
"rare" disorder"? The response is from the Genetic and Rare
Diseases Information Center. aeolus.nhgri.nih.gov/page...D=10000409 This is an NIH
established office.

Although the NIH does list FMD as a rare disorder, an
"information specialist" from the GARD did say that FMD is
"technically" not a rare disease. (see below message)

I do have calls in to the Vascular Division of the NIH and the
Office of Rare Diseases at the NIH asking for an explaniation as
to why an NIH established office says that the classification is
not "TECHNICALLY" correct when every other NIH established
office classifiies FMD as rare. If the classification of "rare" is this
debatable within the NIH then the arguement against our using
NORD IS ABSOLUTELY CORRECT.

As soon as I receive a response from both office, I will share the
information with all of you.

PLEASE READ:

HI SUSAN, I REC'D THIS INFO TODAY AND AM
FORWARDING IT ON TO YOU AS I AM NO LONGER A MEMBER
OF THE FMD GROUP.
MY BEST TO ALL,
YVONNE
----- Original Message -----
From: ".Gard (Genetic and Rare Diseases Information Center)"

To: "'dogwalker'"
Sent: Monday, December 30, 2002 4:01 PM
Subject: Fibromuscular Dysplasia


>
> Dear Ms. Watkin,
>
> This is in response to your e-mail to the Genetic and Rare
Diseases
> Information Center about fibromuscular dysplasia. Although
fibromuscular
> dysplasia is listed on the Office of Rare Diseases website, it is
not
> technically considered to be a "rare" disease (one in which the
prevalence
> is less than 1 in 200,000). The reported incidence of FMD in
adults is
0.6%
> (about 6/1000) via angiography and 1.1% (11/1000) via
autopsy. This
> information is available through emedicine, an online journal.
You will
need
> to register with eMedicine to view articles on this site, but
registration
> is free.
>
>
> We have identified information and resources you might find
helpful. If
any
> of the links we have provided below do not work when you click
on them,
> please copy and paste the entire address into your browser.
>
> Fibromuscular dysplasia (FMD) is an inherited disorder
involving the
ongoing
> destruction of arterial blood vessels. There are areas of
increased muscle
> and fibrous tissue in the wall of the affected arteries, which
alternate
> with enlarged (dilated) areas where the tissue has been
destroyed. This
> irregularity in the arteries increases the risk for stroke.
> The disease may affect the neck arteries that supply blood to
the brain
> (carotid) or the arteries within the brain (cerebral) and cause
stroke.
This
> is most commonly seen in women in their 40s and 50s.
> FMD may also affect arteries in the kidney, intestinal tract, heart
and
> groin. FMD is a cause of renal artery stenosis in younger
adults,
> particularly women 20 to 40 years old.
> This and more information about fibromuscular dysplasia can
be found at
the
> following links from MEDLINEplus, the National Library of
Medicine Web
site
> designed to direct you to information and resources that help
you research
> your health questions.
>
> www.nlm.nih.gov/medlinepl...001273.htm
>
> The National Heart, Lung and Blood Institute (NHLBI), part of
the NIH, may
> also be able to provide you with additional information about
FMD.
>
> NIH/National Heart, Lung and Blood Institute Information
Center
> P.O. Box 30105
> Bethesda, MD 20824-0105
> Phone: 301-592-8573
> E-mail: nhlbiinfo@r...

>
> Recognizing the need for a single source of health information,
many
> health-related federal agencies combined their information
files into one
> database, creating the Combined Health Information
Database (CHID). CHID
> has been available to the public since 1985 and, at present,
covers
sixteen
> subfile topics, one of which is Medical Genetics and Rare
Diseases. CHID
> provides resources about FMD at the following link. Use
"fibromuscular
> dysplasia" as your search term.
>
>
> You can find relevant journal articles about fibromuscular
dysplasia
through
> a service called PubMed, a searchable database of medical
literature.
> Information about finding an article, its title, authors, and when
it was
> published is listed here. For a copy of the full article, you can
contact
a
> medical/university library, your local library for inter-library loan,
or
> order it online using the following link. Using "fibromuscular
dysplasia"
> as your search term should locate numerous articles which
may be of
interest
> to you. To narrow your search, click on the Limits box below the
search
box
> and specify which criteria you would like to use to locate
articles that
may
> be more relevant to your questions. For example, using the
limits of only
> review articles (on the pulldown menu under Publication
Types), only items
> with "fibromuscular dysplasia" in the title, only items with
abstracts,
only
> items in the English language, and only human studies, you
should locate
22
> abstracts on fibromuscular dysplasia. To give you an idea of
the type of
> information you will find, attached is a small text file containing
three
> (3) of these abstracts.
> =PubMed>
>
>
> Online Mendelian Inheritance in Man (OMIM) is a resource that
you might
find
> useful. OMIM is an electronic catalog of human genes and
genetic
disorders.
> The Web site was developed by the National Center for
Biotechnology
> Information (NCBI), and contains text and reference
information. It also
> contains links to MEDLINE, another electronic database of
medical and
> research articles. Although the language is technical, it is
considered
to
> be a very comprehensive source of information. Based on the
complex
> information found in OMIM, you may benefit from discussing its
contents
with
> a medical professional. Click the following link to visit the OMIM
page
for
> fibromuscular dysplasia.
>
0>
>
> We hope that the links we are providing give you a good
starting point in
> your search for helpful information and resources. We suggest
that you
> regularly revisit the web sites provided in this email for new
information
> and resources that may become available in the future. We
strongly
> recommend that you discuss this information with a medical
professional.
If
> you have any additional questions or concerns, please contact
us again.
>
> Sincerely,
>
>
> Information Specialist
>
> The Genetic and Rare Diseases Information Center has been
established by
the
> National Human Genome Research Institute and the Office of
Rare Diseases
at
> the National Institutes of Health to provide responses to public
information
> requests. Information Specialists are available Monday
through Friday,
> 12:00 p.m. to 6:00 p.m. Eastern Standard time (excluding
Federal
holidays),
> to respond to questions about genetic and rare diseases.
>
> Telephone: 888-205-2311
> TTY: 888-205-3223
> Email: GARDinfo@n...
> Fax: 202-966-5689
> Mail: PO Box 8126
> Gaithersburg, MD 20898-8126
>
> Important Disclaimer:
> The materials provided above are for informational and/or
educational
> purposes only and are not intended as a substitute for
professional
medical
> care, advice, diagnosis, and/or treatment. This material does
not
represent
> an endorsement of any specific tests and products by the
National Human
> Genome Research Institute or the Office of Rare Diseases at
the National
> Institutes of Health. We cannot guarantee the accuracy,
completeness,
> timeliness, or usefulness of the opinions, advice, services, or
other
> information provided above. Moreover, we strongly recommend
that you seek
> the advice of your health care provider with any questions
regarding your
> medical care.
>
>
> >
>
> ----Original Message----
> Hello: can you tell me if Fibromuscular Dysplasia is
> classified as a "RARE" disease? If not, what classifies
> as a rare disease?
> Yvonne Watkin
> Victim of FMD
>

Edited by: fmdqadmin  at: 12/31/02 5:36:29 pm
Celeste
Unregistered User
(12/31/02 1:10 am)
Reply
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

Susan
Unregistered User
(1/9/03 8:16 am)
Reply
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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