Navigation Links
Millions Around World to Observe Rare Disease Day
Date:2/13/2009

at aren't approved. Medical and social services may be denied because those making the decisions are not familiar with the diseases. Also, treatments for rare diseases tend to be more expensive than treatments for more common diseases."

In 1983, the Orphan Drug Act was passed by Congress to create financial incentives for companies to develop treatments for rare diseases. Since then, nearly 330 "orphan" (for rare diseases) drugs and biologics have been approved by the U.S. Food and Drug Administration (FDA). FDA estimates that from 11 to 14 million Americans benefit from these products. However, that still leaves more than 15 million Americans with diseases for which there is no approved treatment.

Rare Disease Day also will highlight the unique partnership that exists among the patient community, government entities such as the NIH Office of Rare Diseases and FDA Office of Orphan Products Development, medical professionals, researchers, and companies developing orphan products.

Although this is the first Rare Disease Day observance in the U.S., it is the second globally. The concept was launched in Europe last year by the European Rare Disease Organization, EURORDIS, a sister organization to NORD. This year, Rare Disease Day also is being observed in other parts of the world, including Canada, Australia, and China. The plan is to have a global Rare Disease Day on the last day of February each year.

NORD, a federation of individuals and patient organizations, was established in 1983. It provides advocacy on behalf of the rare disease community; research grants and fellowships; educational services; and patient assistance programs.

For more information about Rare Disease Day activities in the U.S., go to NORD's website (www.rarediseases.org). For information about the global observance, go to

SOURCE National Organization for Rare Disorders (NORD)
Copyright©2009 PR Newswire.
All rights reserved

Page: 1 2 3

Related medicine news :

1. Hospitals Could Improve Outcomes for Patients and Save Millions According to Hill-Rom 10th Annual Pressure Ulcer Survey
2. Congress Poised to Add Millions of Uninsured Children to Successful, Bipartisan Health Plan
3. Academy releases emergency preparedness tools to enable millions more people to shelter in place
4. Billions Directed to Baghdad ... Millions Rejected for Children
5. New Study Shows Arthritis Significantly Limits Millions of Americans Ability to Work
6. Saving Millions of Childrens Lives Is Possible
7. TransMedia Group to Open Curtain on Innovative Hospital Bed Curtain that Will Save Millions in Maintenance
8. Report Shows Millions May Be Driving with Uncorrected Visual Impairments
9. Thanks to Homecare, Millions of Older Americans Celebrate Thanksgiving and Other Holidays at Home
10. Mitts Millions Cant Buy Iowans Health Care Reform
11. 32nd Annual Hutch Holiday Gala Raises Millions for Cancer Research
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:8/22/2014)... disabilities and multiple chronic conditions are screened for breast ... no chronic conditions, a new study has found. , ... moderate disabilities or women with only one chronic condition, ... the Li Ka Shing Knowledge Institute of St. Michael,s ... have other measures of social vulnerability, such as low ...
(Date:8/22/2014)... August 22, 2014 Key West Health ... experts revealed their much anticipated study results of the ... today and released an accompanying infographic on their website. ... can have a major impact on the skin and ... and more. , When asked how they determined the ...
(Date:8/22/2014)... (PRWEB) August 22, 2014 Until now, those ... standard crutches or walkers to keep mobile. Thanks to an ... made much more effective. , He developed a prototype for ... an injured leg or foot but provide comfort and reduce ... to different heights, it is also convenient and easy to ...
(Date:8/22/2014)... Chest pain, breathing difficulties, fainting. Each year approx. 265,000 ... of serious illness. New research from Aarhus University and ... as many as every fourth patient are ... severe symptoms that led to the acute hospitalisation., "Naturally, ... examinations at the hospital disprove that there is a ...
(Date:8/22/2014)... lactose intolerance. However, these are two entirely different mechanisms ... do not digest lactose properly because they lack an ... potentially much more dangerous cow milk allergy, however, the ... IgE antibodies. , According to statistics, about two to ... genuine milk allergy. Less adults are diagnosed with the ...
Breaking Medicine News(10 mins):Health News:Women with severe, chronic health issues are screened for breast cancer less often 2Health News:Key West Health & Beauty Announces The 12 Best & Worst U.S. Cities For Skin Study 2Health News:Assistive Device for Walking Invented by InventHelp Client (VBL-501) 2Health News:Many patients are discharged without a diagnosis 2Health News:Scientists uncover why major cow milk allergen is actually allergenic 2
... will now enable Indians who have acquired medical degrees from ... will be conducted by the National Board of Examinations (An ... The purpose of the registration is only to qualify for ... Medical Council and shall not confer any other right whatsoever ...
... to suffer from the negative effects of coffee that has ... the coffee. Caffeinated coffee has been found to boost blood ... risk of heart disease. However, a new study by Dutch ... Nutrition claims that caffeine might not be the only ingredient ...
... new study published by New England Journal of Medicine ... of peripheral arterial disease(PAD) may benefit from walking a ... ,Kerry J. Stewart, Johns Hopkins University, Director of Clinical ... pain during exercise, so they stop, which makes them ...
... recent health survey across England showed that many do ... cancer and other serious diseases. The survey included nearly// ... trends were revealed by the study. ,The survey ... eating and household income. Almost 40% of women in ...
... environment and self to lead healthy, disease free lives. ... habit of hand washing could help us reduce the risk of ... get our hands dirty, apart from heavy house work and gardening, ... not bother to wash our hands even before a meal. Recent ...
... Breast cancer has been associated to many risk factors ... alcohol consumption. Several earlier studies have linked alcohol to ... also because smoking often accompanies drinking, researchers have not ... ,Now, researchers from Cancer Research, UK, who included ...
Cached Medicine News:Health News:Caffeine is not the only culprit in coffee! 2
(Date:8/21/2014)... 2014 /PRNewswire-iReach/ -- ScriptPro has been certified by ... Common Security Framework (CSF). According to Russ ... "We appreciate this rigorous, top-to-bottom audit. Security-minded customers ... certification signifies. Our business partners need to know ... CERTIFICATION PROCESS: ScriptPro,s internal security processes and controls ...
(Date:8/21/2014)... August 21, 2014 BreedIT ... Ltd., the exclusive worldwide license holder and distributor ... breeders and researchers, today is pleased to announce ... with Seach Ltd, a leading Israeli medical Cannabis ... and develop new breeds of medical Cannabis to ...
(Date:8/21/2014)... 21, 2014 InfinityQS International, Inc., the ... Intelligence , today announces Infusion Chicago, its 9 ... be held Oct. 9-10, 2014, at the Chicago ... showcase the necessity for implementing a quality system ... Intelligence to gain insight into production processes. Complimentary ...
Breaking Medicine Technology:ScriptPro Achieves HITRUST Certification 2BreedIT Ltd. and Seach Ltd. Form KanaboSeed to Develop New Medical Cannabis Varieties 2BreedIT Ltd. and Seach Ltd. Form KanaboSeed to Develop New Medical Cannabis Varieties 3BreedIT Ltd. and Seach Ltd. Form KanaboSeed to Develop New Medical Cannabis Varieties 4InfinityQS to Host Manufacturing Intelligence Conference in Chicago 2
... ... , LONDON, Dec. 14 A new solution developed by IBM ... Malaria Partnership, is helping to save lives using everyday technology to ... , (Photo: http://www.newscom.com/cgi-bin/prnh/20091214/NY25146-a ) , (Photo: ...
... , GENEVA, Switzerland, December 14 ... Meeting was held,in Bermuda on 7th December. In excess of ... and overwhelmingly approved all the resolutions,put forward. , ... Shortt of Galmoy,as the new Director of Corporate Communications. In ...
Cached Medicine Technology:Saving Lives with SMS for Life 2Saving Lives with SMS for Life 3Saving Lives with SMS for Life 4Saving Lives with SMS for Life 5Calcitech Holds Annual General Meeting 2
1.0 mm Micro System. The Titanium Micro System is also useful in the practice of ENT, Neurosurgery and Handsurgery....
... Cfix cable fixation system is a flexible ... need for crimping and address the surgeon's ... mechanism provides the surgeon with the ability ... required prior to final cutting without the ...
... System is a unique and versatile posterior ... fusion constructs, as a translational implant in ... anchoring element for bone or metallic implants, ... of implant configurations. Songer Cables offer advantages ...
Specially designed combination of demineralized bone fibers and demineralized bone cubes that are both osteoinductive and osteoconductive. Packs well into bone defects. Eliminates the need to mix can...
Medicine Products: