Millions Around World To Observe Rare Disease Day PDF Print E-mail
Saturday, 19 February 2011 08:20
Millions Around World To Observe Rare Disease Day
The Relief Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2011.  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.  Insurance cost for treatment of rare diseases is very expensive and cost prohibitive.  Also, payments for the treatment of rare diseases is often denied by most insurance plans which leaves patients and families without hope for a better future.”
A rare disease is one that affects fewer than 200,000 Americans.  There are nearly 7,000 such diseases affecting nearly 30 million Americans.
World Rare Disease Day was launched in Europe four years ago and last year was observed in 46 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”.
The Relief Foundation represents patients and families affected by Scleroderma.  Scleroderma (skleer-oh-DUR-muh) comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin.  Scleroderma is a chronic autoimmune disorder which means the body's tissues are attacked by its own immune system.  In the simplest of terms, Scleroderma is an overproduction of collagen that can result in thickening or tightening of skin and scarring of internal organs.
Scleroderma is rare and it is estimated by several sources that about 300,000 Americans suffer from this debilitating disease.  Although it’s more common in women between the ages of 25 and 55, the disease also occurs in men and children.  The cause of Scleroderma is unknown and it affects people of all races and ethnic groups.
The Relief Foundation was founded out of a need to provide access to information, tools and people who can bolster the quality of life for individuals living with Scleroderma. Thus, our mission is to be a resource and support organization dedicated to promoting public awareness and providing Relief to people living with Scleroderma and their families.
The Relief Foundation awareness event will be hosted by Lew Prince and Vintage Vinyl at 6610 Delmar Blvd, St. Louis, MO  63130 on Rare Disease Day between 11:00am–1:00pm.  The event will include poster displays, the distribution of fliers, RDD merchandise give-a-ways, a raffle and culminating with a balloon release.
In the U.S., the coalition supporting Rare Disease Day includes patient organizations and advocacy groups, medial professionals and associations, government agencies, researchers, and companies developing treatments for rare diseases.
For more information contact:
Kelly J. Ellison, The Relief Foundation
Founder and President
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
www.relief-foundation.org
314-497-0040
or visit www.rarediseaseday.us. for information about Rare Disease Day events in the U.S.
The Relief Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2011.  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.  Insurance cost for treatment of rare diseases is very expensive and cost prohibitive.  Also, payments for the treatment of rare diseases is often denied by most insurance plans which leaves patients and families without hope for a better future.”

A rare disease is one that affects fewer than 200,000 Americans.  There are nearly 7,000 such diseases affecting nearly 30 million Americans.

World Rare Disease Day was launched in Europe four years ago and last year was observed in 46 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”.

The Relief Foundation represents patients and families affected by Scleroderma.  Scleroderma (skleer-oh-DUR-muh) comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin.  Scleroderma is a chronic autoimmune disorder which means the body's tissues are attacked by its own immune system.  In the simplest of terms, Scleroderma is an overproduction of collagen that can result in thickening or tightening of skin and scarring of internal organs. 

Scleroderma is rare and it is estimated by several sources that about 300,000 Americans suffer from this debilitating disease.  Although it’s more common in women between the ages of 25 and 55, the disease also occurs in men and children.  The cause of Scleroderma is unknown and it affects people of all races and ethnic groups.

The Relief Foundation was founded out of a need to provide access to information, tools and people who can bolster the quality of life for individuals living with Scleroderma. Thus, our mission is to be a resource and support organization dedicated to promoting public awareness and providing Relief to people living with Scleroderma and their families.

The Relief Foundation awareness event will be hosted by Lew Prince and Vintage Vinyl at 6610 Delmar Blvd, St. Louis, MO  63130 on Rare Disease Day between 11:00am–1:00pm.  The event will include poster displays, the distribution of fliers, RDD merchandise give-a-ways, a raffle and culminating with a balloon release.

In the U.S., the coalition supporting Rare Disease Day includes patient organizations and advocacy groups, medial professionals and associations, government agencies, researchers, and companies developing treatments for rare diseases.
For more information contact:
 
Kelly J. Ellison, The Relief Foundation
Founder and President
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
www.relief-foundation.org
314-497-0040
or visit www.rarediseaseday.us. for information about Rare Disease Day events in the U.S.

 
More articles :

» Could The Drug Gleevec Be The First Possible Treatment For Scleroderma?

Investigators have identified a drug that is currently approved to treat certain types of cancer, , that could provide the first treatment for . The news will be presented at the annual meeting of the on October 18 in Philadelphia. "There has never...

» Understanding Autoimmune Diseases

When an intruder invades your body – like a cold virus or bacteria on a thorn that pricks your skin – your protects you. It tries to identify, kill, and eliminate the invaders that might hurt you. But sometimes problems with your immune system...

» Liver Autoantibodies in Patients with Scleroderma

Thelma L. Skare & Renato M. Nisihara & Osvaldo Haider & Pedro M. Azevedo & Shirley R. R. UtiyamaReceived: 5 January 2010 / Revised: 13 August 2010 / Accepted: 26 September 2010# Clinical Rheumatology 2010Association between...

» Vitamins for Scleroderma

is a class of diseases in which your skin and organs tighten and harden. This autoimmune condition occurs when your body produces an excess of , a protein that comprises your connective tissues. Scleroderma may affect the skin on your hands and...

» Actelion Announces FDA Approval of Brand Name, Veletri, for Pulmonary Arterial Hypertension

US, Inc., today announced that the U.S. Food and Drug Administration (FDA) has approved the brand name VELETRI® for the company's epoprostenol for injection therapy. VELETRI has been commercially available since April 2010 as Epoprostenol for...

» Symposium Addresses Unique Needs of Young Adults with Rheumatic Diseases

The Arthritis Foundation is sponsoring the 2nd Annual Arthritis in PrimeTime symposium on Saturday, October 22 at the Long Beach Renaissance Hotel in Long Beach. This premier educational and motivational event fosters active and fulfilling lives for...

Add comment

Do feel free to leave your comments, as they would add value and knowledge to the community. However, please refrain from making any disparaging, uninformed, or unrelated comments. Thanks :)

Security code
Refresh