Director of Public Policy

23 Apr, 2020


Director of Public Policy

EveryLife for Rare Diseases (ELF)
Washington, DC

The EveryLife Foundation for Rare Diseases (ELF) is seeking a Director of Public Policy to lead our federal
and state advocacy programs, focused on closing the innovation gap for rare diseases and ensuring
patients have access to treatment and diagnosis opportunities.

The EveryLife Foundation is a science-based advocacy organization dedicated to bringing treatments to
the 30 million Americans with rare diseases. Currently, there are fewer than 400 approved treatments
for 7000 rare diseases. The science exists for many of these diseases to be treated; however, treatments
may never be developed because of roadblocks in the development process, such as a lack of
investment and a challenging regulatory environment. The Foundation works with patient organizations,
industry, academic scientists, the Food and Drug Administration (FDA), and National Institutes of Health
(NIH) to improve the clinical development process.

Reporting to the Senior Director of Policy and Advocacy, the Director of Public Policy takes the lead in
developing and implementing the organization’s policy agenda at both the federal and state level. The
Director of Public Policy will also plan and execute the EveryLife Foundation Annual Scientific Workshop,
manage the substantive and administrative elements of the Community Congress membership program,
and lead the Community Congress Regulatory Working Group.

Responsibilities include, but are not limited to:
· Monitoring and analyzing relevant activity on Capitol Hill, in the executive branch, the Food and Drug
Administration, National Institutes of Health as well as other US and International Health Agencies and
relevant legislation at the state level;
· Providing strategic analysis and background for the development of ELF’s annual policy agenda on both
a federal and state level, alongside any potential international policy issues related to drug
· Developing and implementing strategy for advancing policy goals with key decision-makers in the
legislative and executive branches;
· Organizing the Advocacy efforts of ELF’s policy team and other staff who monitor and act on the
national and state level policy agenda;
· Leading the Foundation’s Newborn Screening, Community Congress, and Scientific Workshop programs
and events;
· Direct report – Newborn Screening Fellow;
· Working with Board members and other key stakeholders to write and publish policy papers, as well as
workshop proceedings.

· A minimum of five years of related experience, preferably in health policy;
· A science background, with FDA-focused expertise and experience, including familiarity with the drug
development process and strong scientific knowledge in this area;
· Strong writing capability and history of publishing papers in academic journals;
· Demonstrated ability to analyze public policy proposals, including the drafting of legislative language;
· Experience in and comfort communicating with high level Congressional and executive branch policymakers and staff;
· Ability to use data in shaping policy messages;
· Experience in coalition-building and working collaboratively in a team environment;
· Ability to communicate complex information clearly in writing and in oral presentations to a range of
· Strong organizational and interpersonal skills;
· Ability to think strategically;
· PhD or Master’s degree in a related field preferred.

HOW TO APPLY To apply, please send an up-to-date resume and cover letter with salary requirements

BENEFITS This is a full-time, direct-hire position. Compensation is
commensurate with experience and includes a competitive benefits package. This position is based in
Washington, DC and will require some travel.

REQUIRED: 4-year degree

Job posted: 2020-04-23