Talk:Rare disease

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It[edit]

It is hard to say what a rare disease is, and this is a problem with the pending deletion of the related List of Rare Diseases. Take Behçet's disease for example. In the United States only 15,000-20,000 people have been identified with it. The diagnosis of the disease is much lower as many symptoms (eye problems, joint problems, ulcers) have to be pieced together before the thing is found, and it takes many years to develop. It has a higher incidence rate in parts of Asia/Europe too. Sabar 09:24, 11 June 2006 (UTC)

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Something is wrong with the definition: "An orphan or rare disease is generally considered to have a prevalence of less than 5% affected individuals in the society." A disease that affects even 1% of the people in a population is a very common disease, likely to be dealt with every week by a general practitioner. But what does "less than 5% affected individuals in the society" mean? I've never heard a formal definition, but most physicians would reserve the term rare for something seen once or twice or less in an average career of general practice. A disease like that would probably have a prevalence of 1 in 100,000 individuals but that definition still includes thousands of reported diseases. Alteripse 03:54, 9 May 2004 (UTC)

Does the term refer to a particlar region or globally? "Certain infectious diseases" could be common in one country but rare in the country to which the traveller returns to - and eg Sickle Cell Anaemia. Jackiespeel 18:29, 15 January 2007 (UTC)

As an epidemiologist, incidence is preferable to prevalence since prevalence is comprised of both incidence and survival - patients who survive longer with a given disease will be part of a prevalence that is higher than for a disease which is either swiftly fatal or readily cured, whether by medicine or by the person's immune system. Further, our concern about rare diseases apparently varies according to whom is affected. Rhabdomyosarcoma is a very rare cancer, but because it affects children, there's quite a bit of research on it. --Dan (talk) 16:49, 16 January 2009 (UTC)
While the logic of your argument is undeniable, the fact is that all the sources concern themselves with prevalence. WhatamIdoing (talk) 17:58, 2 July 2009 (UTC)

NIH' Office of Rare Diseases[edit]

I've created a template to simplify markup for this external link to the NIH's Office of Rare Diseases (ORD) - see Template:RareDiseases, which takes as parameters the Disease ID Number and optionally also alternative text (i.e. the Disease's name) to display. David Ruben Talk 13:40, 25 April 2007 (UTC)

External links[edit]

I usually leave a specific note about inappropriate external links that I remove from articles, but there's no major theme here: dead links, links with basically no information at them, links that are only tangentially related to rare diseases, and massive duplication of efforts. Please, please go read the guidelines at WP:EL before re-inserting links in this section. You can also get help at the doctor's mess if you want.

Of course, if there's a single link that you think would be interesting or informative for the average reader (imagine a student writing an essay for a school assignment), then please feel free to propose it here, on this talk page. If several editors think it's reasonable, informative, appropriate, and compliant with the usual guidelines, then of course it could be included. WhatamIdoing (talk) 22:09, 3 May 2008 (UTC)

Wikipedia has some guidelines about what external links are considered appropriate and which are not. The rules are at WP:EL and WP:MEDMOS. "Unique social hubs" are not appropriate links for a Wikipedia article. Internet chat rooms, discussion forums, social networking sites, etc., etc., are not wanted. Please quit adding that link. WhatamIdoing (talk) 03:39, 30 May 2008 (UTC)

Definition[edit]

The two sentences in the lead each seem to give a different, but possibly overlapping definition. Can we combine these into one definition? Are all conditions defined as "rare diseases" necessarily life-threatening or chronically debilitating, as the second sentence suggests? What is meant by "special combined efforts" and why are they a corollary of low prevelance? As leads go, this one has just fallen short of the "written in a clear, accessible style" test for this layman. -- Timberframe (talk) 14:02, 28 April 2009 (UTC)

Thanks for your comments. The first sentence is the usual rule of thumb. (A variant [older] on that rule is that a general practice physician would only see one such case in his/her entire career.)
The second is a specialized definition for a particular program. There are other such specialized definitions, and it might be better to move it to a section dealing with the variety of definitions. The "special combined efforts" is the bureaucratic equivalent of the last section in any standard journal article, and its plain English meaning is "Please give my department more money". WhatamIdoing (talk) 17:55, 2 July 2009 (UTC)

Thanks for the explanation. I feel that I've had it explained to me now, but haven't grasped what was said. The first bit makes sense to this simpleton, and perhaps that's where we need to start and finish the lead in order to make it comprehensible to a wide readership. We could then go on to how the concept applies to various specialised circumstances. Writing the latter is way beyond me but perhaps I could serve you specialists as a lay proof reader. -- Timberframe (talk) 22:37, 2 July 2009 (UTC)

I did a little work on it today; please let me know what you think.
As for the first sentence, it's a remarkably common definition (and really the only one, before the US federal law was passed in 1983), but I'm not sure where to find proof of that. If you have any sourcing ideas, please feel free to share them. WhatamIdoing (talk) 23:04, 2 July 2009 (UTC)

Dead weblink and redundance[edit]

The weblink nr.6 (the one which should lead to this certein drug act) is dead. Besides I noticed that both the section 'prevalance' and 'characteristics' have a quiet similar sentence speaking about the fact that some diseases are only rare among children... Otherwise a well-comprehended article! --85.176.141.182 (talk) 14:34, 18 December 2011 (UTC)

Orhpan disease = Rare disease?[edit]

Currently, Multiple Sclerosis affects between 2 and 150 per 100,000 according to its Wikipedia article. However, there's always a shortage of funds for research and the most effective treatement for it, an interferon drug named Avonex, costs my sister around $1600-$2000 per month, for one injection per week. (Thank God for medical insurance and Medicare!) By the standards of this article, it's not quite a rare disease, but it's often referred to as an orphan disease because very few people are aware enough of the issue to help, and most charities simply ignore it. This might look like I'm trying to guilt people into donating, but I'm not. I'm only suggesting that diseases that are finding it hard to raise funds simply because the public either isn't aware of it or don't understand how badly they need money shouldn't be lumped in with a set of otherwise unrelated disorders that aren't being studied much only because they really are rare. I'm not in a position, right now, to create a new page because I don't know enough about the subject to do the job the way it needs to be done, so I'm tossing this out in the hope that somebody who does will be inspired to do what I think need doing.JDZeff (talk) 00:51, 12 June 2012 (UTC)