Patient Advocacy Summit 2014: Preparing for Success – Lobbying at the State and Federal Level

August 15, 2014

In America, the power to make change is available to all. But knowing how to effectively use your time and energy to make a difference is something that requires a full understanding of how lobbying works at the state and federal level.

Are you looking to see the process of a drug already in development move more quickly through the approval process? Are you struggling to get an unapproved medication authorized for use? It’s never to early to start preparing for World Rare Disease Day and to meet other advocates who can help you reach your goals when advocating for new, better and faster treatments.

We welcome seasoned advocates Jennifer Bernstein of Horizon Government Group, Julie Jenkins of Rare Disease Legislative Associates, and James Romano of Patient Services, Inc., to guide and inspire attendees during this unique session.

What will you learn? This session will

  • Teach you the best way to get your message across
  • Teach you how to prepare an effective presentation.
  • Give you tips to put together concise meeting materials easily
  • Tell youn how to inspire and command your team with efficiency and empowerment

Putting It Into Practice – 21st Century Cures

Once you’ve got the basics down, we’ll move onto a project you can really sink your teeth into. Jennifer Bernstein presents her deep dive session on 21st Century Cures.

The House Energy & Commerce Committee is currently working on a 21st Century Cures Initiative. The Initiative is a bipartisan effort to take a comprehensive look at what steps Congress can take to accelerate the pace of cures in America. The committee will examine everything from the discovery of clues in basic science to streamlining the drug and device development process, to unleashing the power of digital medicine and social media in the treatment delivery phase.

The session continue to talk in more detail about the initiative, what it means for you, and then provide you with an opportunity to weigh in on this issue with the Committee.

Introducing Jennifer Bernstein


Jennifer joined Horizon Government Affairs as Vice President, focusing on legislative and regulatory developments within the pharmaceutical, biotechnology and medical device sectors. Prior to joining Horizon, Jennifer was Vice President of Healthcare Research at a healthcare advisory and financial services firm and was responsible for anticipating and translating legislative and regulatory catalysts within all sectors of the healthcare marketplace.

Introducing Julia Jenkins


Julia was appointed as Executive Director and Secretary/Treasurer of the Board of Directors of the Everylife Foundation for Rare Diseases in December after serving as the Director of Public & Government Relations since the Foundation’s founding in 2009.  Julia initiated Rare Disease Legislative Advocates to serve as a communication platform for rare disease stakeholders to work on legislative issues and to help elevate the voice of rare disease patients on Capitol Hill.  Under Julia’s leadership RDLA has expanded to host the only Legislative Conference & Lobby Day that invites all rare disease groups to come together on Capitol Hill.

Introducing James Romano

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James Romano is currently the Director of Government Relations and Advocacy at Patient Services Incorporated (PSI).  James has lobbied for the passage of the Ricky Ray Hemophilia Relief Fund Act (Public Law 105-369) on behalf of the Hemophilia Community, of which James has five family members. After college, James has worked on Capitol Hill as a legislative assistant/executive assistant to a Member of Congress for four years. In 2002, James joined the Washington, DC lobbying firm, the Health and Medicine Counsel of Washington (HMCW) as a contract lobbyist where he represented groups such as the Hemophilia Federation of America, the Dystonia Medical Research Foundation, the Sudden Infant Death Syndrome


Can’t attend in person? You can’t afford to miss this! Our new Livestream component will allow up to 5,000 interested advocates from around the globe to attend virtually. The event will be broadcast live with opportunities for patients to participate from afar using social media, including twitter and Facebook. Follow using #2014GGSummit

To view the full schedule of events click here.

To register to attend the summit in person, click here.

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