Today, at 5:00pm, Our co-founder and Director of Advocacy, Heather Long, will be interviewed by Hari Khalsa, The Healthcare Whisperer, live on her radio blog show. Heather will be discussing her journey with her son Cal who passed away in 2006 at five years old to an undiagnosed disease.  Since her son’s death, Heather has committed herself to being an advocate for him and other patients in the rare and undiagnosed community.  Cal is the inspiration behind a current bill being presented to the legislature to establish a database for undiagnosed disease cases. She will be discussing this bill in detail and giving information on how the public can help make sure this bill is passed

You can Click here to listen live at 5:00 pm or listen to the interview again later. If you have any questions for Heather about the bill, you can call in to the show at (805) 830-8363


Below is a synopsis of today’s show from Hari’s radio blog show.


For most of us, when we go to the doctor with symptoms, we are diagnosed and treated.  Imagine going to the doctor and being told there were no answers as to why the symptoms were occurring.  Then imagine, this is your child and all the specialists referred to have no answers.  What if you were told this was a rare illness and no one knew how to diagnosis it?  What would you do?

This is the story Heather Long is going to talk about on this week’s show.  One of Heather Long’s three children (Cal) passed away in 2006 at five years old to an undiagnosed disease. Heather was told that her son’s death was likely caused by a very rare metabolic disease, and she has since focused her energies on being an advocate for patients suffering from undiagnosed and rare diseases.

In 2008, Heather co-founded a nonprofit organization, U.R. Our Hope., that assists individuals and families who are on the journey of finding a diagnosis or are navigating through the health care system after a rare diagnosis. In 2011, Heather co-authored H.R. 2671- The CAL Undiagnosed Diseases Research and Collaboration Network Act, which was proposed in the 112th Congress and is scheduled to be re-introduced during the current 113th session. And recently, Heather proudly joined the Global Genes Advocacy Leadership Group.