Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session !
The Everylife Foundation Action Center is calling for your action on November 15th!
Find more information here and contact your representatives!
PKU Patient Jennifer Payne is taking action. Take a look at her request below.
“Please close the gap between PKU and the readily available treatment known as the category of medical food, a designated orphan therapy. Patients deserve access to the latest innovations in the nutritional management of PKU, which stem from NIH research but continue to be denied and are often not reimbursed.” – Jennifer Payne
Also, you can attend click here to find Jennifer’s online lecture on December 3rd! Click here to find out more info.
