It Is Time to Tell the FDA about LBD

It’s Time to Tell the FDA about LBD! 

FDA seeks nominations for diseases to spotlight in 2016-2017

Email the FDA by Friday, December 5, 2014

Food and Drug Administration

The Food and Drug Administration (FDA) is seeking nominations of diseases that should be included in its patient-focused drug development initiative. The Prescription Drug User Fee Act (PDUFA) requires the FDA to obtain the patient perspective on disease severity and currently available treatments for a set of disease areas. 

While the FDA has published a preliminary list of diseases, Lewy body dementia is not included. The number of emails and letters per disease that are received from the general public will influence the FDA’s decision.


Taking action is easy. LBDA has prepared a sample letter to the FDA that you can personalize. 

  • Replace the red text at the bottom of our sample letter with your name, city, state of residence.
  • Below your name, add a statement about yourself and your connection to LBD, whether you are a patient, caregiver, advocate, medical expert, etc.
  • Copy and paste all of the text from the sample letter into the Comment field on the dedicated webpage provided by the FDA. (Include the docket number in your comments (Docket No. FDA-2012-N-0967).
  • Complete the First Name and Last Name fields on the webpage.
  • Select “Individual Consumer” for the required “Category” field.
  • Click "Continue" and finish any instructions provided by the website.

And please encourage your family and friends to do the same thing right away! Remember, the deadline for public comment is Friday, Dec. 5, 2014!

Act now and together we can:

Increase Knowledge, Share Experience and Build Hope!