rare diseases
Posted on May 3, 2008, 3:37 amby admin
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http://www.rarediseases.org/
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http://www.healthdoctoronline.com/news/20080409/U_S__study__New_therapy_offers_hope_for_rare_blood_disorders.html
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http://www.netdoctor.co.uk/diseases/facts/childrensdiseases.htm
http://money.cnn.com/news/newsfeeds/articles/newstex/IBD-0001-24190061.htm
http://blog.case.edu/case-news/2008/04/30/schizophrenia
http://www.wibw.com/sports/headlines/18374169.html
http://online.wsj.com/article/SB120882121714933013.html?mod=rss_opinion_main
http://rarediseasesnetwork.epi.usf.edu/
http://www.rare-diseases.eu/2007/pre-conference-workshops-November
http://www.hon.ch/HONselect/RareDiseases/
http://www.azcentral.com/arizonarepublic/arizonaliving/articles/0430rabiesbrain0430.html
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http://www.associatedcontent.com/article/384405/are_you_missing_a_chromosome_a_look.html
http://www.eurordis.org/
http://www.rarediseases.org/?name=Rare+Diseases
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http://www.marketwatch.com/news/story/experimental-novartis-biotech-drug-shows/story.aspx?guid=%7BEE723119-4C35-4583-B47D-D9F5A224961C%7D&dist=msr_22
http://achronicdose.blogspot.com/2008/04/taking-look-at-healthcare-policy-mccain.html
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The most popular links about rare diseases (by google opininon):
Intensive training for medical staff reduces serious complication ... - EurekAlert press release
... supporting basic, clinical, and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. ...http://www.eurekalert.org/pub_releases/2008-04/nioc-itf042508.php
A modern bugbear, April 12th
SIR - Your otherwise excellent article on HIV transmission was misleading when it bracketed HIV and hepatitis C together as sexually transmitted diseases. Hepatitis C is a blood-borne virus that can be sexually transmitted. Sex, however, is an extremelyhttp://www.economist.com/blogs/theinbox/2008/04/a_modern_bugbear_april_12th.cfm
State expands genetic testing for newborns The Wichita Eagle
Newborns in Kansas will be tested for a wide range of potentially deadly but treatable genetic disorders beginning July 1. Parents may not notice anything different, unless something turns up on their child's test. Babies already undergo a routine bloodhttp://www.kansas.com/news/story/388799.html
Krabbe disease Galactosylcerebrosidase deficiency
This is a rare disease seen in one among 150,000 infants. Krabbe disease is other wise known as Globoid cell leukodystrophy or Galactosylcerebrosidase deficiency or Galactosylcereamidase deficiency. The disease is usually inherited and the brain of patiehttp://rarediseasesandmedicines.blogspot.com/2008/04/krabbe-disease-galactosylcerebrosidase.html
NORD - National Organization for Rare Disorders, Inc.
National Organization for rare Disorders is dedicated to helping people with rare, orphan diseases. Rarediseases.org contains information on the prevention, ...http://www.rarediseases.org/
Rare Diseases: PDGFR and cKIT Receptor Activity 4 Rare Diseases
Despite the low incidence of rare diseases, their impact can be profound. Find information on 4 rare diseases which have a common link alterations in PDGFR and cKIT. Learn ...http://4RAREDISEASES.COM
Genetic and Rare Conditions
... acidosis, lysosomal storage diseases, mannosidosis, maple syrup urine, mitochondrial, neuro ...http://www.kumc.edu/gec/support/
Genzyme Aims Its Research At Rare Diseases - CNNMoney.com
Genzyme GENZ specializes in developing treatments for rare inherited disorders. Such "orphan" diseases, as they are often called, affect fewer than ...http://money.cnn.com/news/newsfeeds/articles/newstex/IBD-0001-24448904.htm
What Can Cause Bad Breath?
What Can Cause Bad Breath? April 30th, 2008 by Rone Hooper Simple Answers - What Causes Halitosis Bad Breath? Halitosis, or bad breath is almost inevitable to a degree in everyones life time. However, not everyone is aware that they suffer from thishttp://www.4healthconcerns.com/what-can-cause-bad-breath
Rare red panda dies at W. Orange zoo The Star-Ledger
Pemba, the red panda who ar rived with much fanfare at the Turtle Back Zoo in West Orange last year, has died, zoo officials said. The cause of death for the rare animal is unknown and the zoo is awaiting test results, Jeremy Goodman, the zoo's director,http://www.nj.com/news/ledger/essex/index.ssf?/base/news-4/1209443779261040.xml&coll=1
U.S. study: New therapy offers hope for rare blood disorders
U.S. researchers said Monday that an experimental compound might be used to treat myeloproliferative disorders MPD, a class of rare blood diseases that can cause leukemiahttp://www.healthdoctoronline.com/news/20080409/U_S__study__New_therapy_offers_hope_for_rare_blood_disorders.html
Home - NORD Rare Disease Support Community - Inspire
The NORD rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration...More about this group ...http://www.inspire.com/groups/rare-disease/
NIH Office of Rare Diseases ORD
The Office of rare diseases ORD at the National Institutes of Health NIH coordinates research and information on rare diseases at the NIH and for the ...http://rarediseases.info.nih.gov/
Office of Rare Diseases
The Office of rare diseases ORD at the National Institutes of Health NIH coordinates research and information on rare ...http://rarediseases.info.nih.gov/
Muscular dystrophy type linked to missing protein: study - AFP
"Unfortunately, rare diseases like limb-girdle muscular dystrophy don&39t get the attention or funding they deserve," said Gerald Weissmann, editor-in-chief ...http://afp.google.com/article/ALeqM5hOI00iQw5nX4RwUPxd61MLYToo-w
AZ's 'biological McCarthyism' targets Kofa pumas
Rare Kofa puma gunned down last year by State of AZ YUMA -- The Arizona Game and Fish Department has been making misleading statements about the role pumas play in bighorn population levels and has had to issue one public correction. Other uncorrected mihttp://dpatterson.blogspot.com/2008/04/azs-biological-mccarthyism-targets-kofa.html
Muscular dystrophy type linked to missing protein: study AFP via Yahoo! News
French and German researchers have discovered a promising protein link to a form of muscular dystrophy that affects the voluntary muscles around the hips and shoulders, according to a study released Wednesday.http://news.yahoo.com/s/afp/20080501/ts_afp/usmedicinehealthresearchfrancegermany_080501024116
Family Fights Fatal Disease
A mother and father are fighting to save the lives of their two children, who have both been diagnosed with a rare and incurable disease.http://www.wlky.com/news/15848180/detail.html
Rare Diseases - Information About Rare Diseases
Information about many types of rare diseases and disorders, including causes, symptoms, diagnosis and treatment, including orphan drugs.http://rarediseases.about.com/
European Conference on Rare Diseases 2007 in Lisbon - home page - ECRD ...
European Conference on rare diseases 2007 in Lisbon organised by Eurordis. This page contains the conference introduction and chairpersons welcoming. It explains the participation ...http://www.rare-diseases.eu/2007/home
Common childhood diseases
Some diseases, such as chickenpox, give immunity for the rest of your life, which is why often only children get these diseases.http://www.netdoctor.co.uk/diseases/facts/childrensdiseases.htm
Genzyme&39s Treatments Target Rare Diseases - CNNMoney.com
Specifically, it focuses on treatments for rare inherited disorders. Its also develops therapeutics for kidney diseases, orthopedics, transplants and ...http://money.cnn.com/news/newsfeeds/articles/newstex/IBD-0001-24190061.htm
Medical school faculty member suggests new model for development of schizophrenia
Researchers Find Disease May Result from Small Number of rare Genetic Mutations Doctors have long known schizophrenia has a genetic basis, and have hypothesized that the disease resulted from combinations of common genes, or alleles, each contributihttp://blog.case.edu/case-news/2008/04/30/schizophrenia
Hall of Fame Quarterback Jim Kelly Stops in Topeka to Speak of Childhood Diseases WIBW Topeka
During his playing days, football was Jim Kelly's passion. Now, his passion is childhood diseases.http://www.wibw.com/sports/headlines/18374169.html
Cynicism and Big Tobacco
Lend the FDA imprimatur to an inherently dangerous product to fatten it up for taxation, while at the same time slow down or block the approval of life-saving therapies that treat disease instead of cause it. Congressional priorities are rarely so grotesqhttp://online.wsj.com/article/SB120882121714933013.html?mod=rss_opinion_main
Rare Diseases Clinical Research Network
You have reached the home page for the rare diseases Clinical Research Network RDCRN. Each Consortium within the network provides detailed information on ...http://rarediseasesnetwork.epi.usf.edu/
European Conference on Rare Diseases 2007 in Lisbon ?? Pre-conference ...
This page contains the information on the pre-conference workshops: Orphanet, Thalassemia International Federation, Help lines??http://www.rare-diseases.eu/2007/pre-conference-workshops-November
HON - List of Rare Diseases
Others rare diseases or genetic conditions with: ... List of rare diseases: English - Fran&231ais - Deutsch - Espa&241ol - Portugu&234s ...http://www.hon.ch/HONselect/RareDiseases/
Labs focus on rare, deadly rabies - Arizona Republic
When virologists see the dramatic scene on a slide, they know the animal they are testing had rabies, one of the most deadly diseases in the world. ...http://www.azcentral.com/arizonarepublic/arizonaliving/articles/0430rabiesbrain0430.html
studying hard
There are a lot to cover. At this point, I'm only revising the common and important diseases that I need to know as an intern. The rare diseases.... I leave that to the registrars or for the consultants : I started to come early to the hospital and wenthttp://hafiz238.blogspot.com/2008/04/studying-hard.html
Niche Pipeline Grows at BioMarin Zacks.com via Yahoo! Finance
Strong sales of Kuvan, coupled with accelerating sales of both Aludrazyme and Naglazyme, will drive the company to profitability in 2008 and beyond.http://biz.yahoo.com/zacks/080430/12566.html?.v=1
Are You Missing a Chromosome? A Look at Cri-du-chat Syndrome
At look into a very rare disease that is caused by chromosome 5 genes that are missing and or deleted.http://www.associatedcontent.com/article/384405/are_you_missing_a_chromosome_a_look.html
European Organisation for Rare Diseases. Eurordis : Home Page
Eurordis - Home Page - The Eurordis portal on rare diseases.http://www.eurordis.org/
NORD - National Organization for Rare Disorders, Inc.
National Organization for rare Disorders is dedicated to helping people with rare, orphan diseases. Rarediseases.org contains information on the prevention, treatment and cure of ...http://www.rarediseases.org/?name=Rare+Diseases
European Organisation for Rare Diseases
Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.http://www.eurordis.org/
Alexion Pharmaceuticals, Inc. Q1 2008 Earnings Call Transcript - Seeking Alpha
Patients with these rare blood diseases have few, if any treatment options. Together with expert physicians, we are now driving to initiate Soliris clinic ...Alexion Reports First Quarter 2008 Results MSN Moneyhttp://seekingalpha.com/article/75000-alexion-pharmaceuticals-inc-q1-2008-earnings-call-transcript?source=homepage_transcripts_sidebar
Pee diagnostics
In the Middle Ages, physicians used the appearance of a patients' urine as a key diagnostic: ?? During the Middle Ages, when anatomy studies were rare and very few postmortem examinations were done, urine was one of the few diagnostic tools availabhttp://scribalterror.blogs.com/scribal_terror/2008/04/pee-diagnostics.html
Which Genetic Tests Are Really Worth Getting? WallStreet Journal via Yahoo! Finance
Congress is poised to eliminate a big barrier to genetic testing for risk of certain diseases, but consumers still face challenges in figuring out which ones offer useful information.http://biz.yahoo.com/wallstreet/080501/sb120960715396558293_id.html?.v=1
A Disease That Allowed Torrents of Creativity
If Rod Serling were alive and writing episodes for ???The Twilight Zone,??? odds are he would have leaped on the true story of Anne Adams, a Canadian scientist turned artist who died of a rare brain disease last year.http://www.nytimes.com/2008/04/08/health/08brai.html?_r=1&ref=health&oref=slogin
www.rarediseases.com/
http://www.rarediseases.com/
Rare disease - Wikipedia, the free encyclopedia
Rare diseases, including those of genetic origin, are life-threatening or ... Other diseases, such as many rare forms of cancer, have no ... VIDEO rare DISEASE ...http://en.wikipedia.org/wiki/Rare_disease
Rare disease - Wikipedia, the free encyclopedia
A rare disease sometimes known as an orphan disease has such a low prevalence in a population that a doctor in a busy general practice would not ...http://en.wikipedia.org/wiki/Rare_disease
Experimental Novartis biotech drug shows promise in rare diseases - MarketWatch
"The latest findings are a promising step forward for patients with rare autoinflammatory diseases," said Trevor Mundel, head of global development ...http://www.marketwatch.com/news/story/experimental-novartis-biotech-drug-shows/story.aspx?guid=%7BEE723119-4C35-4583-B47D-D9F5A224961C%7D&dist=msr_22
Taking a Look at Healthcare Policy: The McCain Campaign
In the midst of what has been quite a rollercoaster of a week, I was able to participate in a press call with the McCain campaign that focused on his healthcare proposals. Senior policy advisor Doug Holtz-Eakin and former Hewlett-Packard CEO Carly Fiorinahttp://achronicdose.blogspot.com/2008/04/taking-look-at-healthcare-policy-mccain.html
Scientists use experimental treatment to restore some vision in those with rare eye disease Minneapolis-St. Paul Star Tribune
NEW YORK - Scientists for the first time have used gene therapy to dramatically improve sight in people with a rare form of blindness, a development experts called a major advance for the experimental technique.http://www.startribune.com/science/18329754.html
Canada Flummoxed by High Drug Prices for Rare Diseases
A drug called Elaprase, approved for a rare genetic disorder called Hunter Syndrome, costs roughly 400,000 a year in Canada, the Globe and Mail reports. Provincial governments in British Columbia and Alberta fund the Shire drug for patients who need it,http://blogs.wsj.com/health/2008/04/14/canada-flummoxed-by-high-drug-prices-for-rare-diseases/?mod=WSJBlog
genome.gov Genetic and Rare Diseases Information Center
Contact information for the Genetic and rare diseases Information Center, sponsored by NIH&39s Office of rare diseases and the National Human Genome Research ...http://www.genome.gov/10000409
Rare Diseases Clinical Research Network
... a one-day conference focused on conducting clinical research in rare diseases. ... Release: NIH Launches Clinical Studies Nationwide to Investigate rare diseases ...http://rarediseasesnetwork.epi.usf.edu/
National Organization for Rare Disorders, Inc.
National Organization for rare Disorders is dedicated to helping people with rare, orphan diseases. Rarediseases.org contains information on ...http://www.rarediseases.org/
Some Drug Makers See Rare Diseases As Step To Bigger Markets - CNNMoney.com
In 1983, President Ronald Reagan signed the Orphan Drug Act, which provides incentives to companies that develop treatments for rare diseases - those having ...http://money.cnn.com/news/newsfeeds/articles/djf500/200804041540DOWJONESDJONLINE000918_FORTUNE5.htm
Breakthrough in Gene Therapy Improves Sight in Nearly Blind
Scientists use gene replacement therapy for the first time to dramatically improve sight in people with a rare form of blindness. The breakthrough, reported Sunday by the New England Journal of Medicine, has the potential to reverse blindness from other khttp://www.technologyowl.com/i89317-c134-rss
Rare Panda Dies at NJ Zoo WCBS 880 New York
A rare Asian red panda kept at Essex County's Turtle Back Zoo has died. READ MORE >>http://wcbs880.com/content_page.php?contentType=4&contentId=1965037
10 dead Afghanistan, rare liver disease wheat contamination
KABUL, Afghanistan: As many as 10 people have died in western Afghanistan from a rare liver disease believed to be caused by contaminated wheat, officials said Saturday.At least 161 people were also hospitalized with Gulran disease in Herat province on thhttp://www.iht.com/articles/ap/2008/04/19/news/Afghan-Rare-Disease-Deaths.php
NIH Office of Rare Diseases ORD
The Office of rare diseases ORD at the National Institutes of Health NIH coordinates research and information on rare diseases at the NIH and for the ...http://rarediseases.info.nih.gov/
rare diseases terms
http://rarediseases.info.nih.gov/asp/diseases/diseases.asp
Orphanet Journal of Rare Diseases Home page
Welcome to Orphanet Journal of rare diseases ... Michaela Auer-Grumbach Orphanet Journal of rare diseases 2008, 3:7 18&160March&1602008 ...http://www.ojrd.com/
Canada Flummoxed by High Drug Prices for Rare Diseases - Wall Street Journal Blogs
Especially vexing are drugs for rare diseases. Because the medicines have such a small market, the price per patient is high ?? hundreds of thousands of ...http://blogs.wsj.com/health/2008/04/14/canada-flummoxed-by-high-drug-prices-for-rare-diseases/?mod=WSJBlog
In Search of Another Hidden Horde, Autistic Children with Mito?
In the past several months, more and more scientific studies have added evidence that disputes a link between thimerosal and rising autism rates, and that link autism to mercury. Concurrently, a number of studies offer further evidence about genetic of fhttp://www.autismvox.com/in-search-of-another-hidden-hoard-autistic-children-with-mito/
Rare panda dies at Turtle Back Zoo phillyburbs.com
WEST ORANGE, N.J. - A rare Asian red panda kept at Essex County's Turtle Back Zoo has died.http://www.phillyburbs.com/pb-dyn/news/104-04282008-1526241.html
Rare Genetic Disease Mutation Protects Against Malaria
The mutation that causes the rare genetic disease pyruvate kinase deficiency protects against malaria, states a new study.http://living.oneindia.in/health/wellbeing/2008/genetic-disease-mutation-malria-180408.html
Orphanet
The portal for rare diseases and orphan drugs ... care for rare Diseases. Provide adapted services for the rare diseases community ...http://www.orpha.net/
Welcome to the Rare Lung Diseases Consortium Web Site
The rare Lung diseases Consortium RLDC is a network of cooperating clinical centers and patient support organizations that are working with the National Institutes of Health NIH ...http://rarediseasesnetwork.epi.usf.edu/rldc/index.htm
NIH Office of Rare Diseases ORD
... printer friendly version...http://rarediseases.info.nih.gov/html/resources/info_cntr.html







