Research Advocacy Manager - Remote

The Celiac Disease Foundation, established in 1990, is a leading global patient advocacy organization committed to accelerating diagnosis, treatments, and a cure for celiac disease. Our mission is to improve the health and well-being of the millions of individuals around the world affected by this genetic autoimmune disease through our strategic investments in research, advocacy, and education. Our iCureCeliac® patient registry and extensive patient recruitment services enable us to identify qualified patient candidates and speed their enrollment to advance critical disease research. Our unparalleled advocacy program has led the way to secure federal recognition and first-ever research funding from agencies including the U.S. National Institutes of Health and the Department of Defense. We adhere to the highest scientific and ethical standards as we work each day to promote understanding of celiac disease, empower our patient and provider community, and collaborate with partners and stakeholders to carry our mission forward.

JOB DESCRIPTION

Are you driven to bring awareness to celiac disease and help solve the critical issues that impact the health of those affected? The Remote Research Advocacy Manager will play a key role in helping the Celiac Disease Foundation engage patients and caregivers to ensure their insights and experiences influence celiac disease research towards treatments and a cure and shape public policy to improve the quality of life for all affected. This role will be responsible for enhancing patient and constituent engagement in the Foundation’s iCureCeliac patient registry, iRecruitCeliac services, and research advocacy programs. In addition, the Research Advocacy Manager will support the CDF Research Prizes and Awards program and will collaborate with the Policy and Communications team to ensure that the patient perspective is understood and reflected in partner research and development programs, Foundation communications, and policy and advocacy priorities.

QUALIFICATIONS

The ideal candidate for this role will possess, and will demonstrate through verifiable examples during the interview process:

• Minimum 3 years of experience in advocacy and patient/community engagement work in the non-profit or healthcare sectors
• Superior writing, organizational, administrative, and interpersonal skills
• Clear and effective communication, with the demonstrated ability to translate complex policy topics into understandable content – note that this is a writing-intensive role
• Understanding of stakeholder interests/concerns, with successful track record of engaging patients and cultivating positive relationships
• Strong detail orientation, initiative, and flexibility
• Self-starter willing and able to take responsibility and ownership for producing timely, high-quality work with limited supervision
• Ability to thrive in a fast-paced remote environment with shifting priorities

KEY RESPONSIBILITIES

• Lead the development and implementation of the Foundation’s research advocacy engagement strategy and related tactics to enhance engagement with external stakeholders, including industry partners, ensuring the celiac disease patient perspective is strongly represented and integrated in their research programs.
• Serve as the copy editor for research materials and communications to include website, newsletter, and social media content, brochures, presentations and other collateral as needed.
• Manage the iCureCeliac patient registry and work collaboratively on iRecruitCeliac programmatic needs, including program monitoring and evaluation, coordinating ongoing communications internally and externally, and supporting revenue generation activities, as needed.
• Establish and manage patient advisory boards and focus groups and facilitate other patient engagements including communication with participants and planning/coordination of meetings, surveys, and other activities to obtain patient insights that will inform the strategy, design, conduct, and reporting of research and clinical trials.
• Support the Celiac Disease Foundation Research Prizes and Awards program, including management of nomination and grant application processes, recruitment of selection jury and awardee/laureate communications, financial/contract management and reporting, and all associated communications deliverables.
• Build and maintain knowledge of celiac disease patients' experiences, needs, and perspectives on critical issues related to diagnosis and treatment, as well as knowledge of how industry and regulatory agencies are defining patient engagement to ensure maximum impact of the Foundation's research advocacy initiatives.
• Stay informed of research advocacy programs and activities led by other non-profit organizations, coalitions, and partners. Help identify potential opportunities for collaboration, sponsorship, position statements and/or policy development relevant to celiac disease research advocacy.
• Cultivate relationships and drive patient-centered collaborations with external stakeholders, including industry partners, to incorporate the celiac disease patient perspective in their work, especially around the Foundation’s priority areas including clinical trials, big data, while promoting research advocacy activities.
• Manage sponsor agreements, contracts, and budgets related to assigned partnerships and research advocacy engagements.
• Track and report on key research advocacy accomplishments,
• Apply strong program management and administrative skills to develop project plans and timelines; monitor and manage project budgets, contracts, and/or grants; ensure complete and accurate records; and compliance.
• Understand and be passionate for the non-profit advocacy space.

JOB BENEFITS

• Full-time, remote work position with a 9/80 schedule
• Comprehensive benefits offered – medical, dental, and vision insurance, FSA and more
• 403(b) retirement savings plan with 6% employer match
• Generous personal time-off and holidays
• Employee Assistance Program to support counseling and care

If you are a highly motivated and experienced individual who is passionate about making a difference in the lives of individuals affected by celiac disease, we encourage you to apply for this exciting opportunity.