It is Rare Disease Week 2016 and there were hundreds of advocates at Rare Disease Day today at NIH in Bethesda, Maryland. Patient Worthy has been providing live coverage from the NIH so be sure to check us out on Twitter @PatientWorthy for real time updates and to join the conversation!
Here is what our Editor in Chief had to say about the past 6 hours,
“seeing our representatives and senators who are empassioned about making a difference in the rare disease world is awesome.
Here, you really see and understand the notion that alone, we are rare, but together we are strong.”– Patient Worthy Chief Editor, #RDDNIH 2016
"The Cures Act focuses on personalized medicine, which of course is the way of the future" Rep. Lance #RDDNIH pic.twitter.com/3yRhfoZRNt
— Patient Worthy (@PatientWorthy) February 29, 2016
You can read more about the Cures Act here. Patient Worthy is looking forward to what tomorrow brings! Be sure to tag your tweets w/ #RDDNIH and #patientworthy!
Want to meet us in person? Tweet @BeckaPW!
Caregivers have needs too! Visit the @NIH caregiver resource site at https://t.co/JaGohkoRr6 #RDDNIH #RareDiseaseDay #LeapYear #LeapDay
— Patient Worthy (@PatientWorthy) February 29, 2016