The Opportunity

It is estimated that there are as many as 7,000 rare diseases worldwide, affecting 1 in 10 people. Between 25 and 30 million Americans are impacted by rare diseases, and half of them are children. Rare diseases shorten lives, with 30% of children not living to see their fifth birthdays. According to Chiesi Global Rare Diseases, the economic burden of rare diseases is ten times higher than mass-market diseases. It is a narrative of disruptive impact that gets too little attention or resources.

WARD’s Foundation is about to change that. The 501c3 nonprofit is committed to increasing visibility and resources for families in the rare disease journey. Over the last few years, that has primarily consisted of raising funding to establish a center for pediatric rare diseases. Going forward, the organization is working to grow an impact model of increased visibility for rare diseases, crisis navigation services for families, a peer-support network and advocacy program.

In 2024, WARD’S Foundation has established a new three-year strategic plan with a goal of building out the organizational model to realize increased impact ahead of multi-state scaling. The centerpiece of programming will be the Crisis Navigation Program, formalizing a role the organization has played informally to support families typically near the beginning of the rare disease journey following a diagnosis. A Navigation Manager is sought to lead the development and management of this new program.

The Role

The Navigation Manager will partner with the Executive Director to build the Crisis Navigation Program, to include a case management-style structure that works collaboratively health systems, focusing on the unique needs of families. The Navigation Manager will be responsible for creating and implementing this program, managing its operations, and ensuring it meets the emotional, logistical, and social needs of the families served. The ideal candidate will be a licensed social worker or equivalent professional with experience in case management and family support services.

Chief responsibilities include:

      Program Development & Implementation

• Design the Crisis Navigation Program, creating a comprehensive structure that supports families through their rare disease journey.
• Collaborate with the health system's internal crisis navigation program to ensure complementary services, focusing on non-clinical aspects of care.
• Develop policies, procedures, and tools for case management, ensuring effective tracking and support of families' needs.
• Launch the program, monitoring demand for services and documenting the need for increased staffing to address community need.

Case Management and Family Support

• Provide direct case management services to families, offering emotional, logistical, and social support tailored to their unique circumstances.
• Assess family needs to develop individualized care plans, coordinating resources and support networks to address identified needs.
• Monitor and adjust care plans as necessary, ensuring ongoing support aligns with the evolving needs of each family.
• Empower families to navigate complex healthcare and social service systems.
  
  

Collaboration and Partnership Building

• Work closely with the health system’s care management and care team to ensure seamless coordination of services between clinical and non-clinical support.
• Engage with community organizations, social service agencies, and other partners to enhance referral networks and resources available to families.
• Facilitate communication between families and various stakeholders, ensuring their voices are heard and their needs are met.
• Build a portfolio of external partnerships and resources to allow families to fully engage in opportunities available across the communities in which they live.
• Build other partnerships that expand the program’s reach and impact.

Program Management and Evaluation

• Oversee the day-to-day operations of the program, ensuring it runs efficiently and effectively.
• Manage program staff, providing supervision, support, and professional development opportunities.
• Track program outcomes, using data to evaluate effectiveness and make improvements as needed.
• Report regularly to leadership on program performance, challenges, and opportunities for growth.

Family and Community Engagement

• Engage with families to understand their experiences and gather feedback to inform program development.
• Refer families to the organization’s Peer Support Network and other resources that provide families with community and peer support.
• Promote awareness of the Crisis Navigation Program within the community, ensuring that families in need are aware of available resources.
• Empower families by providing them with the knowledge, tools, and support they need to navigate their rare disease journey confidently.
• Potential for engagement at a State or national level.

EXPERIENCE

A successful Navigation Manager candidate will:

• Hold a valid license in social work or an equivalent credential in a related field;
• Demonstrate experience in case management and care navigation, preferably within healthcare or family support settings;
• Understand the unique challenges faced by families dealing with rare diseases or chronic conditions;
• Experience in designing and implementing support programs, with a focus on case management and family services;
• Demonstrate strong relationship-building skills, with the ability to engage and collaborate with diverse stakeholders;
• Have proven organizational skills, with attention to detail and the ability to prioritize tasks; and,
• Work effectively with diverse teams, both within the organization and in the broader community.

To Apply
WARD’s Foundation is an Equal Opportunity Employer committed to inclusive hiring and dedicated to diversity in its work and staff. Employment decisions are made without regard to race, color, religion, gender, sex, national origin, physical or mental disability, age, sexual orientation, veteran status, or any other characteristic protected by applicable state or federal law. Candidates of all groups and communities are encouraged to apply for this position.

Send all inquiries, nominations and applications via email to caroline@wardsfoundation.com. Applications must include a custom/compelling cover letter and CV to be considered for the role. Please also indicate where you learned of the opportunity. Please note that only those candidates invited for screening will be contacted. NO PHONE CALLS PLEASE.