About RDLA

 

RDLA is for rare disease organizations or individuals who are or who want to be legislative advocates.
 
RDLA is open to all members of the rare disease community with an interest in sharing ideas and advocating for the introduction or enactment of legislation. RDLA was created as a clearinghouse of ideas designed to bring together rare disease organizations active on the Hill to share information around common causes. It does not promote any specific policy, but provides support to all rare disease organizations seeking introduction/enactment of legislation. RDLA meetings and the website are an educational resource and a platform for individual organizations to promote their legislation.
 

 

Funding for the website comes from Amicus Therapeutics and BioMarin. 

 

Julia Jenkins from the Kakkis EveryLife Foundation and Jennifer Bernstein from JC White Consulting donate their time to coordinate RDLA activities. Julia coordinates activities within RDLA and the patient community and Jennifer coordinates activities between RDLA and Capitol Hill.         

  

Rare Disease Legislative Advocates is registered as “Unincorporated Association” in California with the Kakkis EveryLife Foundation as its Agent of Service Process. 

 

Participating in or supporting RDLA does not imply support for any of the policy proposals or legislation that are discussed at meetings or promoted on the website.
 
 
 
Julia Jenkins, Director of Public & Government Relations for the Kakkis EveryLife Foundation
The Kakkis EveryLife Foundation is dedicated to advancing biotech innovation for rare diseases by improving the clinical development and regulatory process.  Julia brings a background in grassroots organizing, political campaigns, and legislative advocacy to our team. Prior to the Foundation, she worked as a Political Communications Consultant with the Lew Edwards Group, creating strategic plans to organize communities to support local funding measures.  Julia was Legislative Director and registered California State lobbyist for Public Employees Union Local #1. She coordinated all political action at local, state, and federal levels. She worked on efforts to ensure every Californian would have access to affordable quality healthcare. She led efforts for the San Francisco Democratic Party and worked for House Minority Leader Nancy Pelosi.  Prior to working in politics, Julia was a fundraiser for the Muscular Dystrophy Association.  Julia did her Masters work in Political Science at San Francisco State University and her undergraduate work in Communications at St. Mary's College of California.  
 
Jennifer Bernstein,  Vice President for JC White Consulting
JC White Consulting focuses on legislative and regulatory developments within the pharmaceutical, biotechnology and medical device sectors.  Prior to joining JC White Consulting, Jennifer was Vice President of Healthcare Research at a healthcare advisory and financial services firm.  In this capacity, Jennifer was responsible for tracking, analyzing and developing research reports on legislative and regulatory catalysts within all sectors of the healthcare marketplace including services, managed care, biotechnology, medical devices and pharmaceuticals.   Jennifer managed over 100 accounts, including hedge funds, mutual funds, investment advisers and healthcare corporations.  Previously, Jennifer served as Director of Public Policy for a nonprofit health organization focused primarily on women’s health and economic health disparities.  Jennifer also spent several years on Capitol Hill as a legislative assistant to former Congressman James Greenwood (PA), with an emphasis on issues under the jurisdiction of the Education and Workforce and Energy and Commerce Committees.  Jennifer received her Bachelor of Arts in Political Science and History from Millersville University, and  graduated cum laude from Temple University with Master’s Degrees in American Government and International Relations.