Clinical Care and Education Manager

About Amyloidosis Research Consortium

The Amyloidosis Research Consortium (ARC) is a 501c(3) nonprofit organization founded in 2015, harnessing the power of collaboration and innovation to advance science and both improve and extend the lives of those with Amyloidosis. We are dedicated to transforming the way research is being done and focus on what will have the most significant impact on improving the lives of amyloidosis patients. We forge collaborations across industry, research, clinical care, and regulatory to address unmet needs and accelerate the discovery of new treatments. ARC empowers and supports patients by ensuring they have access to the best quality care and information.

Amyloidosis is the term for a group of rare diseases in which an abnormal protein misfolds and deposits as amyloid in organs and tissues, causing damage and eventually organ failure. There are different types of Amyloidosis, and they vary from one another in their biochemical nature and natural history. Some are acquired, and others are inherited. Despite recent improvements in the use and development of diagnostic tools, increased disease recognition, and FDA approval of treatment options for both ATTR and AL amyloidosis (the most common forms of amyloidosis), there remain broader challenges in key areas that must be addressed by the amyloidosis community to ensure that all patients receive optimal care, regardless of their specific type of amyloidosis.

To learn more about ARC, visit http://www.arci.org.

About the Position

The Clinical Care and Education Manager will be responsible for implementing strategies to expand patient engagement and support, and will guide and educate patients throughout their journey with Amyloidosis. This position is responsible for two primary areas of work: 1) providing support services to patients, and 2) overseeing the development of educational materials and programs. This role serves as a direct point of contact and responds to phone and email inquiries, providing support services to patients and their caregivers as they navigate through their journey from diagnosis to treatment and the challenges they face with a life-threatening disease. The Manager plays a significant role in the growth of ARC and will aid us in serving the amyloidosis community by effectively engaging with patients, caregivers, and expanding our outreach. This role has the opportunity to be a strong and convincing advocate for the needs and perspectives of patients, their caregivers, and family members. This role will be responsible for key patient programs such as the ARC Talks patient webinar series, a peer mentorship program, along with collaborating on the development of multi-media educational content (print, online, video, etc.) to provide current information to patients and caregivers on different aspects of living with and managing amyloidosis.

Reporting to the Director, Community Programs, the Manager will oversee activities to support patients throughout their journey with amyloidosis. The ideal candidate is self-motivated, well-organized, resourceful, and compassionate, with a proven ability to develop, implement, manage, and grow programs. Candidates must have excellent communication skills and significant expertise in patient engagement. This is a full-time, exempt position that will work closely with the Community Alliances & Stakeholder Engagement team and the ARC team. This is an exciting opportunity to work in a fast-paced environment with a team that values a diversity of experience and background and exhibits an exemplary commitment to the rare disease community.

Key Responsibilities

• Create and maintain deep engagement with patients throughout their amyloidosis journey by providing ongoing support, guidance, education, and access to quality care.
• Respond to phone and email inquiries from patients and caregivers; provide accurate and current information on disease management, risks, diagnosis, treatment, clinical trials, and medical provider referrals; proactively follow up as appropriate to provide further guidance and resources to help patients access care, services, or clinical trials.
• Maintain a current knowledge of amyloidosis, different amyloidosis treatment options, and the amyloidosis research landscape. Work in partnership with other teams to maximize access to and impact of programs, ensuring that they represent the patients’ needs appropriately.
• Track and manage shipment of individual patient booklet orders.
• Take an innovative approach and maximize the use of digital and related platforms to share educational materials and resources. Ensure a very high standard of accurate, current, and accessible content.
• Assist in the development of written information to educate and support patients. Assess gaps in currently available content and needs from the community, define objectives, write and edit content, manage expert reviewers/contributors, and start to finish asset development. Assist in the management of content through periodic review and updates.
• Collaborate with the CASE team on the ARC Talks webinar program, including conceptualizing topics, identifying learning objectives, identifying and managing speakers, managing logistics, correspondence, and post-program activities.
• Develop and oversee a peer mentorship program that provides patients and caregivers the opportunity to connect with trained mentors.
• Optimize tools and programs to increase understanding of amyloidosis for patients at different stages of their journey and differing knowledge levels; identify gaps in patient support and education where ARC can innovate and develop programming.
• Oversee strategy for ARC’s Patient Advisory Committee and ensure their perspectives are represented across ARC programs and within the wider community.
• Partner closely with ARC’s Development and Communications Teams to create communications, plans, content, and materials to support the case for funding ARC’s patient programs
• Implement continuous improvement processes; review and evaluate programs by establishing key performance indicators (KPIs), compile data on program effectiveness, reach, and other key metrics to monitor progress internally and demonstrate program efficacy.
• Represent and champion the needs and perspectives of patients and their families
• Identify and engage patients to participate in relevant internal and external activities, including focus groups, advisory boards, and committees, to enhance internal and external programs.
• Develop strong relationships and partnerships with disease experts by establishing a high level of trust and confidence in ARC as an organization and resource.
• Represent ARC at professional meetings, conferences, advisory boards, and in partnership initiatives, as requested; periodic meetings may occur after business hours or on the weekend.

General Responsibilities:

• Manage multiple projects, translating project concepts into timeline- and deliverable-bound project and budget plans in collaboration with ARC staff and subject matter experts.
• Update project management tools that track project-level milestones and timelines against committed resources and project budgets.
• Contribute to program plans, budget, and key performance indicators as part of the annual planning process. Continuously evaluate and measure the effectiveness of programs and identify, as necessary, improvements that serve to sustain and improve the overall quality of care for patients.
• Highly organized, very detail-oriented, proactive, and takes initiative. Ability to perform and prioritize multiple tasks, exercise good judgment, and quickly identify and resolve problems. Comfortable balancing project and program priorities, triaging and escalating internally as needed, as new information emerges that may impact timelines and stakeholder expectations.
• Ability to work independently and collaboratively as part of a team within a dynamic work environment that includes virtual teams.
• Commitment to professional development and continued learning within an organization.
• Passion for non-profits, health equity, patient engagement, and cross-sector collaboration. Ability to be flexible, compassionate, and creative, while having a sense of humor.
• Other duties as assigned.

Qualifications:

• 5+ years of professional experience in social work, case management, or nursing; clinical experience working directly with patients is a plus.
• Experience working with healthcare professionals, preferably in a rare disease setting.
• Experience and demonstrated ability to balance and manage multiple priorities, projects, and deadlines; ownership of the work and outcomes.
• Exceptional interpersonal skills, including the ability to establish and maintain effective relationships with physicians, management, staff, and patients.
• Resourceful, self-reliant, good problem solver, and results-oriented.
• Genuine interest and commitment to the ARC mission, with the ability to effectively communicate our aims to stakeholders.
• Excellent writing skills, project management skills, and attention to detail.
• Demonstrated ability to balance multiple priorities and meet deadlines, and a sense of ownership of the work and its outcomes.
• Ability to work independently and as part of a small team.
• Compassionate, flexible, collaborative work style; a sense of humor is a plus.
• Strong skills in MS Office, including Excel and Word, and ability to learn new software and systems (e.g., webinar hosting platforms).
• Experience with Salesforce for Nonprofits is a plus.
• Up to 20% travel may be required, as needed.

This is an exciting opportunity to work at a growing organization, with a team that values a diversity of experience and demonstrates an unwavering commitment to the amyloidosis community.

How to Apply

Applications will be reviewed on a rolling basis. To apply, please visit https://arci.org/about-arc/careers/.

When submitting your application, please include both your resume and a cover letter. We kindly ask that your cover letter be written in your own words, without the use of artificial intelligence (AI), as we value hearing your unique voice and perspective.

Additionally, let us know where you came across this job posting.

Thank you for your interest in joining our team—we look forward to reviewing your application!

Equal Employment Opportunity

We are proud to be an equal opportunity employer – and celebrate our employees’ differences, regardless of race, color, religion, gender, sexual orientation, gender identity, national origin, age, disability, or Veteran status.

Additional Information

Remote Work Opportunity - Work Schedule & Expectations:

This is a full-time, exempt position requiring 40 hours per week. The role is fully remote, with standard working hours from Monday to Friday, 9:00 AM to 5:00 PM Eastern Time, to ensure effective collaboration with the team. Occasional travel may be required for meetings and events.

Comprehensive Benefits Package:

• Paid Time Off (PTO): 4 weeks of vacation time, 40 hours of sick leave, 10 holidays, and 2 floating holidays. Additionally, we offer PTO-Free Days during the extended holiday break from Christmas to New Year’s Day.

• Medical, Dental, Vision Insurance: Employees have access to comprehensive contributory health plans from day one, with no waiting period. ARC covers 65% of individual and family medical and dental insurance premiums.

• Life and Disability Insurance: 100% employer-paid Life and AD&D coverage, along with Short-Term and Long-Term Disability insurance.

• Flexible Spending Accounts (FSA): Options for both Health and Dependent Care FSAs.

• 401(k) Retirement Plan: Up to a 4% employer match to support your financial future.

• Additional Benefits: Employee Assistance Program (EAP), Workers’ Compensation, and other resources to support your well-being.

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