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Rutgers Hosts "2014 Rare Disease Day" Event - February 25th, 2014

                                                      Thank you to all who participated in our wonderful event.

 

The event can now be seen online by clicking on the link below:

Event

 

https://meetings.rutgers.edu/p6u03ojufhx/

 

Please also view our facebook photo alblum by clicking below:

 

https://www.facebook.com/media/set/?set=a.213017138905403.1073741834.131610027046115&type=3&uploaded=11

 

 

                                                              Presented by:

                                  The School of Health Related Professions

                                               SHRP MS - Clinical Trials

                                          SHRP Office of Student Affairs 

   Rutgers Drug Information Association - SHRP Clinical Trials and School of Pharmacy Student Chapters

 

                 

                                       

                                     For specific event detail information click here.

                                     For the Event Program, Please click here.

 

History of Rare Disease Day

Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. NORD is thrilled to celebrate the 6th US Rare Disease Day this year! The concept has continued to expand beyond the US and Europe. In 2013, more than 70 countries participated and, through social media, the awareness and participation has an even broader reach.

Each year, Rare Disease Day is observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.

To learn more about the global initiatives supported through rare disease day, please visit rarediseaseday.org.

- See more at: http://rarediseaseday.us/about/history/#sthash.rLCi3gtb.dpuf

History of Rare Disease Day

Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. NORD is thrilled to celebrate the 6th US Rare Disease Day this year! The concept has continued to expand beyond the US and Europe. In 2013, more than 70 countries participated and, through social media, the awareness and participation has an even broader reach.

Each year, Rare Disease Day is observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.

To learn more about the global initiatives supported through rare disease day, please visit rarediseaseday.org.

- See more at: http://rarediseaseday.us/about/history/#sthash.rLCi3gtb.dpuf

 

 

 

 

What is Rare Disease Day ?

 

Each year, Rare Disease Day is observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.

To learn more about the global initiatives supported through rare disease day, please visit rarediseaseday.org.

 

How many people have rare diseases?

 

According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting between 25 and 30 million Americans.

 

Who is affected by rare diseases? 

 

Many—but not all—of these diseases are genetic.  Some are apparent at birth.  Some do not appear until much later in life.  It is believed that approximately two-thirds of those living with rare diseases are children.  Everyone knows someone with a rare disease.  Rare diseases are an important public health concern.

 

How many rare diseases have treatments?

Many rare diseases still have no approved treatment.  And many are not even being studied by medical researchers at this time.  Often, people with rare diseases are treated “off-label” (with treatments that are not approved by FDA for their specific disease).  Increasingly, patients are experiencing reimbursement problems with insurance (including Medicare and Medicaid) for off-label treatments.

 

 

 

                 

 

 

 

 

 

 

 


 

 

   
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