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The Community Development Specialist will support the implementation of fundraising programs for assigned communities, including Walk for PKD events, Marathon and 3rd party events. The position will plan and execute tactics on various projects including volunteer communications, direct support of fundraisers, event support and other responsibilities associated with achieving budgeted revenue goals.  Learn more.

The Community Development Strategist leads the execution of the fundraising strategy for assigned community development events. This role is responsible for planning, coordinating, and managing specific Walk for PKD events, the Fundraise Your Way program, 3rd party events, and achieving budgeted revenue goals.  Learn more.

Category: Full-time; Non-Exempt
Reports to: President and CEO
Location: Remote (HQ in Kansas City, MO)

Summary

The Vice President of Community Programs and Education will provide leadership in scientific, clinical, and strategic planning of our patient centric care programs to drive impact on a national scale. They will be responsible for the visioning, development, and implementation of programmatic strategies designed to advance the Foundation’s mission, values and vision. This senior leader will be instrumental in enhancing and expanding our clinical care program offerings, which stand on three pillars: understanding PKD through research, ensuring better care for all individuals with PKD, and educating and empowering the community. They will ensure these programs align with the organization’s mission, work collaboratively with the Growth team to secure funding, and lead with empathy, equity, and innovation to guarantee exceptional long-term patient-centered outcomes. The Vice President will also oversee and mentor a team of at least one direct report, fostering a collaborative environment that promotes professional growth and high performance. The Vice President of Community Programs and Education is a member of the PKD Leadership Team who is committed to the belief that the best way to provide PKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team guided by patient navigation services.

Duties and Responsibilities 

• Lead Centers of Excellence program design and management, including designation, funding, and compliance requirements.
• Provide strategic guidance and oversight to ensure Centers of Excellence provide comprehensive, multidisciplinary care and support services for individuals with PKD.
• Contribute to efforts to translate and encourage the adoption of care standards established by external partners.
• Responsible for annual conference planning in partnership with program chairs, advisory groups, and internal collaborators.
• Develop annual progress report requirements for core mission programs.
• Develop and operationalize comprehensive education strategies tailored for clinicians and patients/families, grounded in regular needs assessments.
• Translate needs assessment findings into actionable educational programs that address the evolving needs of the PKD community.
• Engage with professional societies, patient advocacy organizations, and community groups to raise awareness of PKD and advocate for the needs of individuals affected by the disease.
• Identify opportunities for collaboration, joint advocacy efforts, and knowledge-sharing initiatives with societal partners to advance PKD research and patient care.
• Represent the PKD Foundation in relevant forums, conferences, and stakeholder meetings to promote collaboration and foster partnerships.
• Other duties as assigned.

Preferred Skills and Competencies

Ideal Qualifications

• Master’s degree from an accredited college or university, preferably in public health, or other health and human services related field required.
• Seven plus years’ progressive leadership experience in program management, preferably within the nonprofit, health, or scientific research sectors.
• Demonstrated expertise in medical education, clinician guidelines, equity-driven initiatives, or educational leadership.Experience managing budgets and collaborating with fundraising teams to ensure the sustainability and growth of program initiatives.
• Proven ability to lead diverse teams and drive strategic goals with a balance of empathy and accountability.
• A strategic thinker with a track record of driving innovation and solving complex challenges related to program implementation and impact.
• Demonstrated familiarity with patient-centered research and Good Clinical Practice (GCP) Guidelines
• Committed to acquiring in-depth knowledge of the basics of ADPKD and ARPKD.
• Excellent interpersonal and relationship-building skills
• Ability to work collaboratively with internal and external stakeholders, including staff, volunteers, and vendor partners; high degree of professionalism.
• Strong customer service skills and the ability to problem solve.
• Excellent communication skills, both verbally and in writing.
• Strong organizational and project management skills; proficiency in managing multiple projects simultaneously.
• Proven ability to work independently in a remote environment, managing multiple priorities and deadlines, while also serving as a manager to a multi-person team.
• Familiarity with remote office settings, including video communications (Zoom) and virtual meetings.

Physical Demands

• Must be able to sit or stand for extended periods of time.
• Use hands and arms, read, stoop, crouch, talk, hear, see objects clearly at 20 inches or less.
• Lift and move items weighing up to 20 lbs.

The physical demands described here are representative of those that must be met by an employee to successfully perform the essential functions of this job. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.

Work Location and Travel Requirements

• Position is remote, home-based, available in any U.S. state.
• Employees must have dedicated workspace free from distractions.
• The workspace should be large enough to work efficiently and have reliable internet and phone connectivity
• Employees residing outside of the Kansas City Metro must live within reasonable proximity to a major airport hub for required travel.
• Travel to several professional conferences annually.
• Occasional business travel will be required to the PKD Foundation office in Kansas City, Missouri.

Benefits*

We value our employees’ time and efforts. Our commitment to your success is enhanced by our competitive compensation (commensurate with experience), in addition to a benefits package including:

• Employer paid medical benefits including healthcare, dental, and vision for individual.
• Employer funded HSA (for those who elect a HDHP)
• Life insurance and disability insurance
• 401(k) retirement savings plan with 12% employer contribution, no match required, after six months of continuous service.
• 11+ paid Holidays and 20 PTO days per year
• Paid Half-day Fridays between Memorial Day and Labor Day
• Remote work environment, with a collaborative business center available to employees local to the Kansas City metro area as needed.

*Benefits are subject to board review annually and may change

As required by applicable Pay Transparency laws, PKDF provides a range of minimum compensation for roles that may be hired in locations under these requirements. Multiple factors may be used to determine your actual salary, including: your specific skills and experience, physical location, or other relevant factors. The salary range for this position may be lower or higher in different markets.

The anticipated pay range for this role is: $115,000–$145,000 annually.

Application Process:

Timeline:  Applications will be reviewed on a rolling basis, with a target start date of late 2024 – early 2025.

Apply online here.

Interview Process: Three rounds of interviews with HR, senior organizational leaders, and board members.

PKD Foundation is an equal opportunity employer and dedicated to the belief that all lives have equal value. We are committed to creating a work environment where employees thrive both personally and professionally. We do not discriminate on the basis of race, gender, age, disability, sexual orientation, pregnancy status, veteran status, cultures, beliefs, or any other status protected by law.

Category: Full-time; Non-Exempt
Reports to: President and CEO
Location: Remote (HQ in Kansas City, MO)

Summary

The Vice President of Research Programs will play a pivotal leadership role, shaping the strategy, execution, and reporting of our mission programs to drive impact on a national scale. This senior leader will be instrumental in enhancing and expanding our research program offerings, which funds researchers and clinician scientists across the world who are dedicated to finding answers to help us better understand polycystic kidney disease. They will ensure these programs align with the organization’s mission, work collaboratively with the Advancement team to secure funding, and lead with empathy, equity, and innovation to guarantee exceptional long-term patient-centered outcomes. The VP will also manage and mentor a small team, fostering a collaborative environment that promotes professional growth and high performance. The VP of Research Programs will be a dynamic leader, adept at forging partnerships, driving strategic initiatives, and fostering a culture of excellence across the organization.

Duties and Responsibilities 

• Oversee the planning, execution, and completion of all research projects, ensuring they are conducted on time, within budget, and to the highest standards.
• Direct the development, implementation, evaluation, promotion, and sustainability of the PKDF’s research programs.
• Cultivate strategic partnerships with pharmaceutical companies, biotechnology firms, and medical device manufacturers to accelerate the development and availability of novel therapies for PKD.
• Collaborate on research initiatives, clinical trials, and patient-centered outcomes studies aimed at advancing PKD treatment options.
• Responsible for annual Grant Review and SAP meeting in partnership with program chairs, advisory groups, and internal collaborators.
• Lead the development and dissemination of research findings through data posters and papers, collaborating with internal and external stakeholders to ensure high-quality, impactful publications.
• Ensure a robust and sustainable ADPKD Patient Registry by developing a comprehensive roadmap, evaluating partner performance, redefining enrollment targets, and enhancing patient experience.
• Oversee the implementation of new developments and ensure rigorous user acceptance testing and feedback integration.
• Maintain a relationship with the IRB to ensure the Registry complies with the protocol, updating when necessary.
• Responsible for the selection, management, and collaboration of all vendor relationships associated with the ADPKD Registry.
• Ensure the integrity and quality of data collected through research initiatives, promoting rigorous data management and analysis practices.
• Other duties as assigned.

Preferred Skills and Competencies

Ideal Qualifications

• PhD or Master’s degree from an accredited college or university, preferably in public health, or other health and human services related field.
• Seven plus years’ progressive leadership experience in program management, preferably within the nonprofit, health, or scientific research sectors.
• Proficient in data analysis and the use of impact metrics to drive program improvements, patient outcomes, and make informed decisions.
• Experience managing budgets and collaborating with fundraising teams to ensure the sustainability and growth of program initiatives.
• Proven ability to lead diverse teams and drive strategic goals with a balance of empathy and accountability.
• A strategic thinker with a track record of driving innovation and solving complex challenges related to program implementation and impact.
• Familiar with Good Clinical Practice guidelines.
• Demonstrated familiarity with patient-centered research.
• Experience with Proposal Central is preferred but not required.
• Committed to acquiring in-depth knowledge of the basics of ADPKD and ARPKD.
• Excellent interpersonal and relationship-building skills
• Ability to work collaboratively with internal and external stakeholders, including staff, volunteers, and vendor partners; high degree of professionalism.
• Strong customer service skills and the ability to problem solve.
• Excellent communication skills, both verbally and in writing.
• Strong organizational and project management skills; proficiency in managing multiple projects simultaneously.
• Proven ability to work independently in a remote environment, managing multiple priorities and deadlines while also serving as a manager to a multi-person team.
• Familiarity with remote office settings, including video communications (Zoom) and virtual meetings.

Physical Demands

• Must be able to sit or stand for extended periods of time.
• Use hands and arms, read, stoop, crouch, talk, hear, see objects clearly at 20 inches or less.
• Lift and move items weighing up to 20 lbs.

The physical demands described here are representative of those that must be met by an employee to successfully perform the essential functions of this job. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.

Work Location and Travel Requirements

• Position is remote, home-based, available in any U.S. state.
• Employees must have dedicated workspace free from distractions.
• The workspace should be large enough to work efficiently and have reliable internet and phone connectivity
• Employees residing outside of the Kansas City Metro must live within reasonable proximity to a major airport hub for required travel.
• Travel to several professional conferences annually.
• Occasional business travel will be required to the PKD Foundation office in Kansas City, Missouri.

Benefits*

We value our employees’ time and efforts. Our commitment to your success is enhanced by our competitive compensation (commensurate with experience), in addition to a benefits package including:

• Employer paid medical benefits including healthcare, dental, and vision for individual.
• Employer funded HSA (for those who elect a HDHP)
• Life insurance and disability insurance
• 401(k) retirement savings plan with 12% employer contribution, no match required, after six months of continuous service.
• 11+ paid Holidays and 20 PTO days per year
• Paid Half-day Fridays between Memorial Day and Labor Day
• Remote work environment, with a collaborative business center available to employees local to the Kansas City metro area as needed.

*Benefits are subject to board review annually and may change

As required by applicable Pay Transparency laws, PKDF provides a range of minimum compensation for roles that may be hired in locations under these requirements. Multiple factors may be used to determine your actual salary, including: your specific skills and experience, physical location, or other relevant factors. The salary range for this position may be lower or higher in different markets.

The anticipated pay range for this role is: $115,000–$145,000 annually.

Application Process:

Timeline:  Applications will be reviewed on a rolling basis, with a target start date of late November – early December 2024.

Apply online here.

Interview Process: Three rounds of interviews with HR, senior organizational leaders, including board members.

PKD Foundation is an equal opportunity employer and dedicated to the belief that all lives have equal value. We are committed to creating a work environment where employees thrive both personally and professionally. We do not discriminate on the basis of race, gender, age, disability, sexual orientation, pregnancy status, veteran status, cultures, beliefs, or any other status protected by law.