Hope - It’s In Our Genes!

The last day of February is worldwide Rare Disease Day.

The National Organization for Rare Diseases (NORD) and its European sister organization (EURORDIS) are heading the celebration.  VHL is doing a number of awareness meetings worldwide, including a meeting February 27 in Memphis, Tennessee

http://rarediseases.org

A new effort, Global Genes Project’s Rare Disease Awareness initiative, is launching at the end of February.  Check there for activities that you might be able to leverage in your own community to promote awareness of VHL. 

http://globalgenesproject.org

As printed in the VHL Family Forum 18:1, February 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.