Grassroots Advocacy Manager, GBS|CIDP Foundation International

The GBS|CIDP Foundation International, a non-profit organization, is seeking a self-starting professional to manage grassroots advocacy activities. The Foundation is a non-profit entity providing support, education, research, and advocacy for patients, families, and caregivers who have GBS, CIDP, or related variants such as MMN. The Foundation has 160 chapters in 47 countries; we’re advancing world-class research, ensuring access to care and support, and hiring talented, mission-driven people who make it all happen.

The Advocacy Manager will play a key role in advancing our advocacy efforts by mobilizing patients, families, caregivers, and supporters to participate in state and federal advocacy initiatives. This position will be responsible for developing and implementing grassroots advocacy strategies, building relationships with key stakeholders, and empowering the rare disease community to advocate for policy changes that improve access to care, research funding, and overall quality of life. Lobbying experience is highly desired. This person also will be instrumental in the external marketing of the advocacy program to a variety of audiences. The Advocacy Manager should be a person interested in supporting a community through dynamic non-profit work and should be comfortable in an office environment. This position can expect to travel 10%, mostly to Washington, D.C. This position will report to the Director of Research and Advocacy and will work closely with the Foundation’s lobbying firm.

Principal Duties And Responsibilities

Grassroots Campaign Development: Design and execute grassroots advocacy campaigns that engage and mobilize the patient community around critical policy issues at the local, state, and federal levels.

Community Engagement: Build and strengthen relationships with patients, families, and caregivers to encourage active participation in advocacy efforts.

Advocacy Training: Develop and deliver advocacy training programs (virtual and in-person) to equip grassroots advocates with the tools and knowledge they need to effectively engage policymakers.

Advocacy Events: Plan and coordinate advocacy events, such as an annual Hill Day, to raise awareness and advance policy priorities.

Advocacy Communication: Collaborate with the marketing/communications team to create advocacy-related content, including action alerts, toolkits, fact sheets, social media posts, and newsletter articles to drive engagement.

Coalition Building: Work with other rare disease organizations, patient advocacy groups, and coalitions to coordinate and strengthen advocacy efforts on shared policy goals.

Data Management: Manage advocacy-related data, including tracking advocate participation, communications, and outcomes using Salesforce.

Reporting: Regularly report on advocacy activities, engagement metrics, and campaign outcomes to the leadership team.

Qualifications

Education: Bachelor’s degree in public policy, political science, communications, or a related field. Advanced degree or certifications in advocacy, public health, or nonprofit management is a plus.

Experience: Minimum 5 years of experience in grassroots organizing, advocacy, or government relations, preferably within the nonprofit or healthcare sector. Hill Day/Legislative Action Day planning experience is strongly preferred.

Knowledge: Understanding of the legislative process at the state and federal levels. Experience with rare diseases, healthcare policy, or patient advocacy is highly desirable. Experience lobbying is preferred, but does not need to be a registered lobbyist.

Skills:

Ability to recruit, train, and manage volunteers for grassroots advocacy activities.
Strong communication and interpersonal skills, with the ability to inspire and motivate advocates.
Excellent organizational skills and the ability to manage multiple projects simultaneously.
Familiarity with Salesforce or similar CRMs.
Demonstrated ability to build relationships with diverse stakeholders, including patients, policymakers, and other advocacy organizations.
Strong writing and presentation skills for developing advocacy materials and training sessions.

Additional Qualifications:

Passion for rare disease advocacy and a deep commitment to the organization’s mission.

Willingness to travel for advocacy events and meetings, expected 10%.