Program Coordinator/Advocacy (Rare Disease NPO)

Position: Advocacy Program Coordinator
Supervisor: Director of Advocacy
Location: Washington DC preferred

Status: Full-Time Position
Supervisory Responsibility: No

To Apply: Submit a cover letter and resume

Travel: Must be willing to occasionally travel and work weekends.

Join a high-energy, committed team of professionals dedicated to supporting the advancement of research leading to treatments for people living with Friedreich’s ataxia (FA).

Position Summary:

Work with the Director of Advocacy, the FARA Team and FA community to execute advocacy initiatives and programs that support FARA’s mission. Responsible for administrative organization of advocacy resources and information, planning and implementing advocacy events, liaising with FA advocates and partner organizations, and coordinating with the communications team to keep the community informed on current policies, events, and initiatives. The Advocacy Program Coordinator will help develop relationships with elected officials at both the federal and state level.

The successful candidate will have an interest in advocacy and public policy, professional administrative experience, excellent written and verbal communication skills, the ability to work in a team, and be detail-oriented. The candidate will be given the opportunity to show initiative, acquire new skills, and grow professionally.

Professional Experience Requirements:

• Bachelor’s degree required
• Must have an understanding of the political & and legislative process
• Proficient in a variety of software programs (Microsoft Office – Word, Excel, PowerPoint, Publisher and Adobe Acrobat)

Skills Requirements:

• Strong written and verbal communication skills
• Attention to detail
• Ability to work independently and in a team setting
• Time management and organizational skills
• Ability to work with diverse groups of people with sensitivity and professionalism

Essential Responsibilities:

Working with Director of Advocacy, plan and coordinate FARA participation in specific advocacy programs including United Against Ataxia Hill Day, Rare Across America, and Rare Disease Week

• Regularly meet and coordinate activities with partner organizations
• Plan and draft communications to promote events
• Administer registration process for United Against Ataxia Hill Day
• Execute training of FARA advocates
• Be onsite in Washington, DC for events and meetings when needed
• Participate in FARA policy position decisions
• Acknowledge participants and evaluate impact

Develop relationships at both a federal and state level and collaborate with elected officials to advance initiatives to expedite ataxia research.

• Collaborate with and participate in regular meetings with government officials and their staff
• Coordinate FARA advocate to assist with any initiatives, sponsored legislation, or appropriations requests
• Conduct appropriate follow-up with elected officials
• Acknowledge community participants and evaluate impact

Provide administrative support to Advocacy Program and support general organizational needs

• Stay informed of policies and initiatives that affect FARA Stakeholders
• Grow and nurture advocacy participation in the FA community
• Manage and grow FARA’s advocacy contact database
• Facilitate outreach and communications with FA community members who are participating in advocacy initiatives and programs
• Keep FARA website updated with program information and calls-to-action
• Curate advocacy content from the Rare Disease space to write 5-6 advocacy newsletters a year and work with the communications team to produce
• Assist in preparing updates for FARA Team, Ambassadors, and Board on ongoing advocacy efforts
• Represent FARA at advocacy related meetings as needed (virtual and in-person, usually in Washington, DC) and occasionally at fundraising and/or educational events (some weekend travel required)

Ensure accurate, timely and stakeholder friendly communications with all stakeholders. Follow established organizational policies and procedures and compile information and reports as required.

Demonstrate ability to learn and adapt to changing procedures, methods or processes.

Use a team approach when working with volunteers and the FARA team.

Provide first-rate customer service as front-line stakeholder contact.

Ensure that all FARA stakeholders are communicated to in a clear, consistent and timely manner utilizing strong written and verbal skills to address stakeholder needs.

Attention to detail demonstrating accuracy and efficiency in word processing, data entry, and business correspondence.

Coordinate work activity efficiently, and check that work has been carried out to specification.

FARA is an Equal Opportunity Employer. FARA shall not discriminate because of race, color, age, sex, disability, genetic information, national origin or ancestry, or religion.

If employed by FARA, employees agree to accept and certify to abide by both FARA’s Child Safekeeping Policy and FARA’s Code of Conduct at www.curefa.org/mission under the Policies and Disclosures tab.

FARA offers competitive benefits including medical, dental, life, long-term disability and paid family and medical leave benefits, plus a 401K retirement plan.

Job Type: Full-time

Pay: $52,000.00 - $57,000.00 per year

Benefits:

• 401(k)
• 401(k) matching
• Dental insurance
• Health insurance
• Life insurance
• Paid time off
• Parental leave
• Vision insurance

Schedule:

• 8 hour shift
• Monday to Friday

Education:

• Bachelor's (Required)

Work Location: Remote