Power of Patient Advocacy | Shannon von Felden, MPP | RSDSA

Shannon von Felden is the Director of Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases. She works with rare disease advocates across the country to engage at the local, state, and federal level.
She began her career on Capitol Hill as a Legislative Assistant for Nevada Congresswoman Shelley Berkley working on health care and veterans affairs issues. Shannon has worked with national nonprofit organizations to further their policy and advocacy goals including Juvenile Diabetes Research Foundation and National Osteoporosis Foundation. She received her Master of Public Policy from American University.
Take a moment to view the slides here: bit.ly/32GcmYj
To learn more about complex regional pain syndrome (CRPS) and reflex sympathetic dystrophy (RSD), visit Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)’s website at rsds.org.
#RSDSA #CRPS #RSD

[@greeneyedbabygirl1]

I'm thankful for any & all advocacy on behalf of the CRPS/RSD community. And.. 1000% yes!! I feel like what's happening to us w the opioid epidemic couldn't be more important!! Especially when it comes to the addict vs CPP stigma. The disease memory component of CRPS & what pain med reduction is doing to *permanently force greater continuous pain levels, flares, spreading & loss of quality of life -is exceptionally cruel. We are being blamed & incl in a group that we're not a party to. We aren't addicts..😠😥😔🔥🧊 We're credible patients suffering needlessly!