How To Increase Awareness...

No disease is rare when it affects someone you love.  We all have the power to increase public awareness and counteract inaccurate characterizations and negative representation of this disease. 

It is easy...just copy and pass out “What is ARPKD/CHF?” to all health professionals you come in contact with, including your nephrologist, GI specialist, OB/Gyn doctor, geneticist, perinatalogist, neonatologist, endocrinologist, social worker, nutritionist, nurses, pediatrician, and family physician.  If appropriate include “Diagnosing ARPKD/CHF”.

In addition, we now have a public service announcement (PSA) —”Faces of ARPKD/CHF”.  Do you have a website, MySpace, blog, community bulletin board, or other place where the PSA or documents might be placed to raise awareness?  The PSA can be viewed, downloaded, and linked to different sites, it is GREAT for raising awareness about this disease. 

Help increase awareness and stop the antiquated, obsolete information flow.  Take action.  Set the record straight.  Empower.  No disease is rare when it affects your loved one.   You can make a difference.