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

DANBURY, Conn., Feb. 13 /PRNewswire-USNewswire/ -- The last day of February has been designated as worldwide "Rare Disease Day" to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.

"People with rare diseases remain a medically underserved population in every country," said Peter L. Saltonstall, president of the National Organization for Rare Disorders (NORD), which is sponsoring Rare Disease Day in the U.S. "This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment."

More than 200 organizations, institutions and companies have signed on as "Rare Disease Day Partners" in a U.S. coalition supporting the special observance. The coalition, being coordinated by NORD, includes patient organizations, professional societies, government agencies, medical researchers, and pharmaceutical and biotechnology companies.

Rare Disease Day activities in the U.S. will include a nationwide network of online videos, patient stories and blogs; newspaper, radio, and television reports; state and municipal proclamations; a Rare Disease Hall of Fame for researchers; and other activities designed to raise awareness of what it means to have a rare disease.

A rare disease is one that affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.

"People with rare diseases often face challenges that occur less frequently with more common diseases," Saltonstall said. "These include delay in getting an accurate diagnosis, few treatment options, and difficulty finding medical experts. Many rare diseases have no approved treatment, and insurance may not cover treatments that 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 www.rarediseaseday.org.


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

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:4/21/2017)... ... ... The Patient Advocacy Community of The Beryl Institute presented Eve DeVaro, Director, Patient ... Award in recognition of her extraordinary contributions to the field of patient advocacy ... Institute’s annual Patient Experience Conference on March 20 in Denver, Colorado. ...
(Date:4/21/2017)... Hong Kong (PRWEB) , ... April 21, 2017 , ... ... Printing (U3DP), the first 3D printing facility among higher education institutions in Hong Kong ... 3D printing, in terms of the range and quantity of facilities in Hong Kong. ...
(Date:4/21/2017)... ... April 21, 2017 , ... ... AWARE: A Week of Addiction and Recovery Education, from April 24 to April ... preventing substance use disorders. , The mission of AWARE is to instill ...
(Date:4/21/2017)... , ... April 21, 2017 , ... ... announced an exciting new partnership with the highly regarded and well renowned Asian ... highly innovative, myTAP & myTAP PAP Nasal Pillow Mask, and will stabilize and ...
(Date:4/21/2017)... Worcestershire, UK (PRWEB) , ... April 21, 2017 ... ... Award for Enterprise in the category of International Trade, the UK’s most prestigious ... in international trade, which represents 95% of total revenues and has grown by ...
Breaking Medicine News(10 mins):
(Date:4/20/2017)... April 20, 2017 Research and ... Biosimilar Pipeline and Market Prospects: Addressing Production Complexities Through ... their offering. ... "Global Biosimilar Pipeline and Market Prospects: Overcoming Production ... an in-depth assessment of the current trends in the ...
(Date:4/20/2017)... , April 20, 2017   ZappRx, Inc ., ... specialty drug prescribing process, today announced it closed $25 million ... a venture capital firm based in Seattle ... Qiming Venture Partners . The Series B round included participation ... round in 2014, and GV (formerly Google Ventures). ...
(Date:4/20/2017)... NeuroVive Pharmaceutical AB (Nasdaq Stockholm: ... preclinical results demonstrating anti-fibrotic effects with NV556, ... (NASH), in an additional well-validated experimental NASH ... previously shown similar anti-fibrotic effects in the ... present novel data demonstrating anti-fibrotic effects of ...
Breaking Medicine Technology: