Talk:Rare disease

message: 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)
replies: text: Are they putting rare diseases and orphan diseases together for the sake of this article? 01:19, 25 May 2022 (UTC)

text: From what I have been reading orphan diseases are diseases that have maybe one or two patients in the world that have it and the reason they are considered orphan is because it would not pay a drug company to try and get drug research money for a rare disease with one or two patients. 01:23, 25 May 2022 (UTC)

text: 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)
replies: text: 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)
thread_title: It

message: 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)
thread_title: NIH' Office of Rare Diseases

message: 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)
replies: text: 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)
thread_title:  External links 

message: 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)
thread_title:  Dead weblink and redundance 

message: 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)
replies: text: Removed "orphan disease" as synonym to "rare disease" - they are not the same. MS is not a rare disease (it is not rare) but is an orphan disease (there is no approved treatment). Hope this clarifies. — kashmiri TALK 08:47, 15 April 2016 (UTC)
replies: text: Thank you for that you cleared up a lot for me! OhioGirl42986 (talk) 01:25, 25 May 2022 (UTC)
thread_title:  Orhpan disease = Rare disease? 

message: This page states that ribose-5-phosphate isomerase deficiency is the rarest disease and links to its page. The page for ribose-5-phosphate isomerase deficiency says it is the second rarest disease and calls out the Fields Condition, which does not have a Wikipedia page. This page should be updated if the Fields condition is in fact rarer. 100.2.228.140 (talk) 03:07, 5 January 2022 (UTC)
thread_title:  Inconsistency between this page and ribose-5-phosphate isomerase deficiency 

message: The article dosen't mention on what day we celebrate the Rare Disease Day which is 28th of february for non-leap years and 29th of february for leap years. Or prehaps i am blind and i didn't bother to check out? Anyways, the date is chosen to symbolize the rarity of these diseases, as the last day of February is also the rarest day of the year in non-leap years.
For more info can be found on https://www.rarediseaseday.org/ Luigi Cotocea (talk) 15:07, 29 February 2024 (UTC)
replies: text: @Luigi Cotocea It does say " the last day of February", but perhaps that's a bit subtle! I'll see what I can do to improve it.... (Having already put a banner up on my personal FB page today!) PamD 15:12, 29 February 2024 (UTC)
replies: text: And I've made a similar clarification at Rare Disease Day. PamD 15:19, 29 February 2024 (UTC)
thread_title:  Celebration of Rare Disease Day - On which date?