Friday, 10 December 2010

Rare Disease Day 2011

Millions Around World To Observe Rare Disease Day

The last day of February has been designated as World Rare Disease Day to call attention to rare diseases, which affect nearly 30 million Americans and countless others around the world, as an important global public health concern.

“People with rare diseases remain a medically underserved population in every country,” said Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), which is sponsoring Rare Disease Day in the U.S. “This day will bring together patients and families around the globe who are dealing with some very challenging issues.”

The coalition, being coordinated by NORD, includes patient organizations, professional medical societies, government agencies, medical researchers, and pharmaceutical and biotechnology companies.

Rare Disease Day 2011 activities in the U.S. will include creating a “video encyclopedia” of two-minute videos about many of the nearly 7,000 rare diseases. Also, patients and others will help NORD create a database of physician experts on various rare diseases. In addition, state and municipal proclamations in honor of the day will be sought, and there will be a drive to enlist support for a new Rare and Neglected Diseases Caucus in the U.S. Congress.

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.

“More than half of the people who have rare diseases are children,” Saltonstall said. “Challenges faced by patients and their families include delay in getting an accurate diagnosis, few treatment options, and difficulty finding medical experts. Many rare diseases have no approved treatment. Insurance may not cover treatments that aren’t approved. Also, treatments for rare diseases tend to be more expensive than those for 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, more than 350 “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, but that still leaves more than 15 million Americans with diseases for which there is no approved treatment.

This will be the fourth annual Rare Disease Day. The concept was launched in 2008 by EURORDIS, NORD’s counterpart in Europe. Last year, EURORDIS asked NORD to host Rare Disease Day in the U.S. In 2010, Rare Disease Day was observed in 46 nations around the world. The observance is always on the last day of February.

For more information about Rare Disease Day go to www.rarediseaseday.org
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Books Sold - 6 Nov 2011 to 31 May 2012

Some of you have asked me for my total number of books sold to evaluate KDP Select so here it is. Bear in mind, that results will vary based on genre and author. Good luck and remember, Keep Moving Forward.

Total - 120,836

1. Excuse Me, My Brains Have Stepped Out
Amazon Kindle - 42,559
Paperback -
Smashwords -

2. Frequent Traveller
Amazon Kindle - 35277
Paperback -
Smashwords -

3. Dora's Essentials - Books, Blogs & Smiles 1
Amazon Kindle - 462
Smashwords -

4. Mirror Me Martha (Short Story)
Amazon Kindle - 281
Smashwords -

5. Drive On Hope (Short Story)
Amazon Kindle - 190
Smashwords -

6. Blog-A-Licious Directory 2012
Amazon Kindle - 1
Smashwords -

7. Pandora's Reading Room 1
Amazon Kindle -
Paperback - N/A

8. The Cat That Barked (Short Story)
Amazon Kindle -

9. Dora's Essentials - Examining Anxiety
Amazon Kindle -

10. Dora's Essentials - Books, Blogs & Smiles 2
Amazon Kindle -

11. Elevenses from Around the World
Amazon Kindle -

12. Genetically Modified Foods vs. Sustainability
Amazon Kindle -

Blog-A-Licius - Sherbet Blossom

SherbetBlossom

Blog-A-Licious

Dealightfully Frugal

Blog-A-Licious - The Few, The Proud, The Wife

Blog-A-Licious

My Soul Slippers

Blog-A-Licous - Textbook Mommy

Blog-A-Licious - Blue Frogs Legs

Blog-A-Licious - Pretty All True

Pretty All True

Blog-A-Licious - tbaoo

tbaoo

Blog-A-Licious

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Blog-A-Licious - The Invisible Art

Blog-A-Licious - Rediscovering Domesticity

Rediscovering Domesticity

Blog-A-Licious - Quiver Full

Blog-A-Licious - Cori's Big Mouth

Blog-A-Licious - Great Fun

Greatfun4kids

Blog-A-Licious - Busy Wife

Blog-A-Licious - Steps To Happiness

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Blog-A-Licious - Toby & Max


Blog-A-Licious - Amelie

Raising Amelie

Blog-A-Licious - Peas In A Pod

Blog-A-Licious - Riley

Blognostics - Poetry

BlogNostics

My Awards - September 2010

My Awards - September 2010
Awarded By Jo Frances

My Awards - May 2011

My Awards - May 2011
Awarded By Alejandro Guzman

My Awards - May 2011

My Awards - May 2011
Awarded by Kriti Mukherjee

My Awards - April 2011

My Awards - April 2011
Awarded By Roy Durham

My Awards - June 2011

My Awards - June 2011
Awarded By Sulekha Rawat

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