Senior Director of Advocacy

17 Aug, 2019


Senior Director of Advocacy

EveryLife Foundation for Rare Diseases (ELF)
Washington, DC

The EveryLife Foundation for Rare Diseases (ELF) is seeking a Senior Director of Advocacy to join its
leadership team in Washington, DC.

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 Executive Director and the Board of Directors, the Senior Director of Advocacy is a key
member of the Leadership team and will substitute for the Executive Director when the ED is

Responsibilities include, but are not limited to:
• Responsible for all policy and patient engagement programs and initiatives.
• Three direct reports – Director of Policy; RDLA Program Manager; and Associate Director of
Patient Engagement
• Provide support for all direct reports and be able to fill in for them when they are on vacation
• 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;
• Create & execute strategic plans for advancing policy at both the Federal and State Level
• Political advocacy campaign marketing – ensuring that policy objectives of the Foundation are
presented in an honest and clear manner to the public to drive support for various forms of
• Oversee the Foundation’s RDLA, Newborn Screening, Community Congress, and Scientific
Workshop programs and events
• Oversee all external communication from the Foundation and provide support in the crafting
and editing of e-mails; newsletters; blog posts; action alerts etc
• Some weekend/evening work will be required

The Senior Director of Advocacy will have:
• Must have a back ground in health policy, grassroots advocacy and experience working with
patients. Experience in regulatory or drug development policy is a bonus.
• Prior management experience;
• Experience crafting and managing a budget;
• Strong organizational and interpersonal skills;
• Ability to think strategically;
• Excellent communication skills including ability to write well, copy edit and speak publicly
• Master’s or higher degree in a related field preferred.

To apply, please send an up-to-date resume, writing sample and cover letter with salary requirements to

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.

Senior Management

4-year degree

Job posted: 2019-08-17