Patient Support Manager

Position Title: Patient Support Project Manager

Location: Preferably Hybrid in Reston VA (HQ) or Remote (East Coast or Central time zone preferred)

Reports To: Senior Vice President of Philanthropy & Operations

Position Summary:

The Patient Support Program Manager plays a key role in advancing the Sjögren’s Foundation’s mission to support patients and their families through education, resources, and services. This position oversees the Foundation’s multiple support programs, including U.S. support groups (65 ), volunteer leaders, phone support volunteers (100 ), and the online patient community. The Patient Support Program Manager collaborates across the organization to identify patient needs, connect them with appropriate resources, and ensure all support volunteers receive ongoing training and access to current information. This position reports to the VP of Operations.

About the Foundation:

The Sjögren’s Foundation is a patient advocacy organization dedicated to making a significant difference in the lives of Sjögren’s patients. Sjögren’s is a serious and systemic autoimmune disease affecting 4 million Americans. The mission of the Foundation is to support and educate patients, provide credible resources for healthcare professionals, serve as the voice of Sjögren’s patients in advocacy, and encourage and fund Sjögren’s research. This is an extremely exciting time in Sjögren’s as new research is being conducted that will change what we know about this disease, how it is diagnosed, and how we target treatment and management for patients.

Key Responsibilities:

1. Planning and Execution

• Develop, plan, and oversee annual patient support programs and initiatives ensuring they align with organizational mission and objectives.
• Working with membership program manager, monitor geographic membership trends and evaluate levels of support distribution commensurate with membership volume.
• In collaboration with leadership team members, update and design new volunteer programs and plan for volunteer recruitment and management across functions.

2. Implementation and Growth

• Identify and implement support strategies using a stepped approach. Focusing first on having groups in areas with a higher concentration of Sjögren’s Foundation members or special requested populations and patient support volunteers in areas with a lower concentration of members where group attendance would likely be low. 
• Identify, interview, and train appropriate volunteers for support group leader and patient support volunteer vacancies throughout the US to ensure all members have access to some type of support regardless of location.
• Develop and implement strategies to increase awareness of and participation in support groups in areas with active meetings (live and virtual).
• Plan for growth in online patient support community using tools such as new member resources, Sjogrens.org and member newsletter.
• Strengthen and manage Phone Support Volunteer (PSV) program which is a list of people new patients can call to speak with another experienced patient.

3. Volunteer Training and Management

• Recruit, train, and engage volunteers in areas in need of support
• Monitor volunteer participation and group meeting frequency to ensure groups and volunteers are active and engaged.
• Provide “Connection” resource, a key information and messaging guide, to SGLs and PSVs to ensure they are aware of new and updated resources and information when speaking with patients.
• Manage and support SGLs and PSVs with questions and problem solving
• Provide annual update and training meetings for both SGLs and PSVs geared specifically toward their roles. Update meetings should reinforce best practices, share new information or program changes, develop volunteers and solicit feedback on how things are going.
• Secure agreements from SGLs and PSVs regarding confidentiality and requirements for participating in and acting as a Foundation volunteer.
• In collaboration with leadership team and other organizational roles who rely on volunteers to create a general volunteer training program with information all Sjogren’s Foundation volunteers would need regardless of function or volunteer area.

4. Marketing and Promotion

• Collaborate with Marketing and Communications team to design and execute
• Recruitment projects as needed for volunteer recruitment and support awareness.
• Maintenance and updating of Support Group listing with meeting info, Inspire page and online list of support volunteers in member community, all on Sjogrens.org
• Review and maintenance of volunteer lists in Salesforce and HubSpot
• Support awareness plan using various resources throughout the year
• Obligations under Inspire contract for advertisement throughout year are being met
• Serve as Liaison with Arthritis Foundation to ensure marketing of our partnership with JA Camp availability for children living with Sjögren’s

5. Logistics and Operations

• Coordinate with support group leaders to ensure necessary meeting information for email blasts
• Coordinate and send email invitations for support group meetings to members in meeting area or demographic
• Manage and coordinate shared zoom accounts for support group meetings as well as annual calendar of meeting dates, times and information
• Supply SGLs with guidelines, meeting attendance form link and zoom links for meetings
• Serve as lead staff on Inspire Patient Community. This includes ensuring we fulfill contract obligations, monitoring or community for trends or things that should be reported, coordinating Ask the Expert sessions during the year.
• Stay in tune with other support channels not managed by the Foundation to view support needs and trends.
• Serve as the organizational expert on patient support. Complete responsibility for monitoring and tracking volunteers within Salesforce, on calendar and online listings

6. Evaluation and Reporting

• Track meeting attendance and provide reports on increases and decreases over time.
• Tracking and mapping of volunteers across the country.
• Prepare reports and information to inform continuous improvement and future planning.
• Provide statistics for Board of Directors updates.

Qualifications:

• 3–4 years of experience in program management, support group coordination, patient education, volunteer coordination/management, or related nonprofit roles; experience in a health nonprofit is preferred
• Strong project management skills with the ability to manage multiple priorities, complex timelines, and cross-team coordination.
• Previous experience developing or coordinating patient support programs preferred
• Demonstrated ability to manage a high volume of volunteer staff recruitment and oversight
• Experience leading and training people for an ongoing program
• Experience with Salesforce and HubSpot, (or similar)
• Excellent written and verbal communication skills, with the ability to communicate clearly with patients and volunteers.
• Highly organized, detail-oriented, and able to maintain accurate records across multiple programs.
• Strong analytical skills with experience tracking program metrics, identifying trends, and using insights to recommend improvements.

How to Apply:

Interested candidates should submit a resume and cover letter detailing their qualifications and experience to careers@sjogrens.org. Please put the title Patient Support Program Manager in the Subject: line.

Equal Opportunity Employer:

Sjögren’s Foundation's is an equal opportunity employer and encourages candidates from diverse backgrounds to apply. We are committed to creating an inclusive environment for all employees.