Saturday, February 28, 2009

RSDSA Joins Millions Around World To Observe Rare Disease Day

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 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."

RSDSA is part of the U.S. coalition supporting Rare Disease Day. 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, but 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.

This will be the second annual Rare Disease Day. The concept was launched in Europe last year by the European Rare Disease Organization, EURORDIS, a sister organization to NORD. Rare Disease Day also is being observed in other parts of the world, including Canada, Australia, and China this year. 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 by the patient leaders who worked to get the Orphan Drug Act passed. It provides advocacy in Washington, DC, on behalf of the rare disease community; research grants and fellowships; educational services for patients, the public, and medical professionals; and patient assistance programs.

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

Friday, February 13, 2009

This "IS" Winning Life....

I came across this video on a friends blog and was SO inspired by this young man, that I just had to share this with you all. This man truly knows what it means to "WIN" Life!!!!

After watching this video, please leave a comment about how you were touched by it. And if you feel like posting it on your blog or website, please do so!! The more people we can inspire so they too can truly "WIN" Life, the better!!

Make it an Amazing day....and remember...."WIN" Life by "Getting Back Up!!"

Thursday, February 5, 2009

The Power Of "Choice" & Possibilities!

Do you ever wish that you could change the past?

But if you could change the past, you would be able to correct every mistake, avoid every accident, and never experience the pain of regret?

In fact, you can very easily change the past. How you ask?
Well, you simply must do it before the past becomes the past.

This moment where you are right now will soon be in the past!! So now is your golden opportunity to assure that it will be a past you'll be pleased to have.

With care and focus, with love, discipline and positive intention, you can do just that!!
You can
change what will soon be the past into the best that it can be!!

Imagine not having to wonder what would have happened if only you had been a little more careful, thoughtful or diligent. Imagine living your life with no regrets!!

Imagine it, and know that right now is your chance to make it happen. Use this moment to gift yourself a past that won't need any changes at all!!

You know, any real value that comes to you must come through you. To experience any kind of abundance, is a matter of becoming the lens through which that abundance is focused.

Every moment is bursting with all sorts of possibilities. Yet relatively few of those possibilities ever become reality.

The possibilities that do become reality, do so as the result of being infused with meaning and purpose. That is precisely what you have the opportunity to do!!

From a world of possibilities, you are able to choose those that are the best. And because they have real meaning for you, with your focus and effort you can bring them to life.

Real abundance is not limited to just a lucky few. It is available to anyone who makes the choice to fashion it into something meaningful!!

Discover and experience how you can express, in your own unique way, the ever present value of life!! And as you do, that value will hold more and more meaning for you!!