Thursday 28 February 2013

Rare Disease Day 2013 - Info & G!veaways



On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.

“There are nearly 30 million Americans—and millions more around the world—affected by rare diseases,” said Peter L. Saltonstall, president and CEO of NORD.  “Everyone knows someone with a rare disease.  But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers.  This leaves patients and families without hope for a better future.”

On Rare Disease Day, people with rare diseases around the world promote awareness of the challenges of living with a rare disease.  The global theme for 2013 is “Rare Disorders Without Borders.”  

World Rare Disease Day was launched in Europe in 2008 and last year was observed in more than 60 nations.  It is always observed on the last day of February.  On that day, patients and patient organizations will post stories, videos and blogs online and host events to raise awareness of these diseases, which are often called “orphans”.

This year, the observance has special significance in the U.S. because 1983 is also the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop treatments for rare diseases, and of NORD, which was established by patient advocates in 1983.

 “More than half of the people who have rare diseases are children,” Saltonstall said.  “Challenges faced by patients and their families include delayed 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 400 orphan drugs and biologics have been approved by the Food and Drug Administration (FDA).  It is estimated that approximately 15 million Americans benefit from these products, but that still leaves millions more with diseases for which there is no approved treatment.

For more information about Rare Disease Day activities in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).

*******

In conjunction with Rare Disease Day, Pandora Poikilos' books will be free from 28th February 2013 till 15th March 2013. To download your free copy, please click on the links below.



Excuse Me, My Brains Have Stepped Out is free via KDP Select (Kindle) from now till 3rd March.

Dora's Essentials - Examining Anxiety is free via Smashwords from now till 15th March.

Genetically Modified Foods vs. Sustainability is free via Smashwords from now till 15th March.

Pandora's Reading Room (Short Story compilation) is free via Smashwords from now till 15th March.


a Rafflecopter giveaway

5 comments:

Unknown said...

I am so glad that I stumbled upon a link that lead me to your goodreads page. Your books look amazing and I can't wait to read them!

Beverly Stowe McClure said...

I recently heard of this day from a friend whose grandson has a rare disease that he's one in a million. I pray that someday they'll find cures for these diseases.

Danielle B! said...

This is so cool! I have a rare disease called Reflexive Sympathetic Dystrophy (RSD), which effects less than a million people in the US. I had no clue they had a rare disease day... :)

Terri. said...

I downloaded Excuse Me, My Brains Have Stepped Out and can't wait to read it!!
atthemapletable at yahoo dot com

Stephanie said...

Your books look really interesting and I can't wait to check them out further. I work with people with disabilities so I'm a little bit knowledgeable about some of these issues.
Stephanie
steph0828 at hotmail dot com

Related Posts Plugin for WordPress, Blogger...

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

Powered by BannerFans.com

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

Powered by BannerFans.com

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

Book Blogs Community

Indie Author Blog Hop


indie author blog hop
Previous | Home | Join | Random | Next

In Support Of

In Support Of

Support Me - KIVA

Celebrating Authors

Book Signing @

Read Me - E.Zine Articles

Copyscape

Protected by Copyscape Online Plagiarism Software