Rare Disease Day

February 28, 2009

The National Organization for Rare Disorders (NORD) is coordinating the observance of Rare Disease Day in the United States on February 28, 2009.  On that day - and in the weeks leading up to it - we will join with others around the world to conduct a variety of activities to raise awareness of rare diseases and the need for safe, effective treatments.

This will be the 2nd Annual Rare Disease Day.  The special day was observed for the first time last year in Europe and was coordinated by NORD’s partner organization, EURORDIS.  It is the hope of NORD and EURORDIS that this will become an annual global event, taking place on the last day of February each year.  If you would like to participate and help us spread awareness of VHL, here is a great idea:

If you are willing, please submit a human interest story about yourself or someone you know affected by VHL to rarediseaseday@rarediseases.org, copy to anita@vhl.org.

These stories may be shared with media contacts to help increase awareness of what it’s like to live with VHL.

Click here for more information from the National Organization for Rare Disorders
 

As printed in the VHL Family Forum 17:1, January/February 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.