WHAT IS A BOARD OF DIRECTORS

A Board of Directors is a governing body elected or appointed to oversee the management and strategic direction of an organization. Comprising individuals with diverse backgrounds and expertise, the board acts as stewards of the organization’s mission and values, ensuring its long-term sustainability and success. 
Board members are entrusted with making high-level decisions that align with the organization’s goals and serve the best interests of its stakeholders. They provide oversight, guidance, and governance to executive leadership, holding them accountable for achieving organizational objectives while upholding ethical and legal standards. The board also serves as a link between the organization and its stakeholders, representing its interests and advocating for its mission within the community and beyond!

WHAT DOES THE BOARD DO

The Board of Directors meets regularly for board meetings where they discuss and decide on the strategic direction of the non-profit. In these meetings, they review the organization’s progress, set goals, and make important decisions that affect our future. Outside of board meetings, members are strongly encouraged to take an active role in our organization by attending and participating in fundraisers, whether virtually or in person. They are also invited to join committees, help us network, and assist in fundraising efforts to drive our mission forward.
Here are some of the things the board may do:
• Strategic Planning and Goal Setting: The Board engages in strategic planning and goal setting to steer the organization towards its mission. They assess current programs and initiatives to ensure alignment with long-term objectives. This process helps in setting measurable goals and determining the resources needed to achieve them.
• Fundraising and Resource Development: Board members are actively involved in fundraising and resource development to ensure the organization has the financial means to operate. They leverage their networks and expertise to secure donations and grants. Their efforts are crucial in sustaining and expanding the organization’s programs and services.
• Policy and Governance: Establishing policies and governance structures is a key responsibility to maintain organizational integrity and compliance. The Board creates and updates bylaws, policies, and procedures to guide the organization’s operations. This ensures that the organization adheres to legal and ethical standards.
• Financial Oversight and Budget Review: The Board provides financial oversight and budget review to ensure funds are used effectively and responsibly. They review financial statements, approve budgets, and monitor financial performance. This oversight helps in maintaining financial stability and accountability.
• Advocacy and Community Outreach: Advocacy and community outreach are essential tasks to raise awareness and support for the organization’s mission. Board members represent the organization at public events and engage with the community. They work to build relationships and promote the organization’s goals and values.
• Program Evaluation: The Board evaluates program effectiveness to ensure the organization’s initiatives are meeting their objectives. They review program reports and outcomes to assess impact. This evaluation helps in making informed decisions about program improvements and expansions.
• Committee Participation: Board members participate in specialized committees such as Governance, Development, Finance & Human Resources, and Program to focus on specific areas of need. These committees work on detailed aspects of the organization’s operations and report back to the full Board. This ensures oversight and management.
• Mentorship and Guidance: They offer mentorship and guidance to staff and volunteers, helping to build a strong and capable team. Board members share their expertise and provide support to enhance staff performance and development. This mentorship fosters a collaborative and effective organizational culture.
• Partnership and Collaboration: Building partnerships and collaborations with other organizations and stakeholders is a priority to enhance the organization’s reach and impact. Board members identify and pursue opportunities for strategic alliances. These collaborations help in expanding the organization’s resources and influence.
• Accountability and Transparency: Ensuring accountability and transparency in all organizational activities is fundamental to maintaining trust and credibility. The Board monitors and reports on the organization’s activities and performance. They ensure that stakeholders are kept informed and keeps the organization accountable.

WHO CAN APPLY TO BE ON THE BOARD?

We invite individuals who are passionate about our mission and committed to making a difference in the lives of those with chronic, complex, and rare diseases to apply to join our Board of Directors. Ideal candidates come from diverse backgrounds and bring a wealth of experience in areas such as healthcare, finance, law, marketing, fundraising, and non-profit management. 
We are looking for individuals who can contribute their expertise, networks, and resources to help us achieve our goals. Previous board experience is a plus, but not required. Most importantly, we seek those who share our dedication to advocacy, equity, and improving healthcare outcomes for all. If you are ready to be an active, engaged, and impactful member of our team, we encourage you to apply! You can learn more about what we require, what we are looking for and submit your application below.

BOARD MEMBER REQUIREMENTS

✔ Age Requirement: Must be 18 years old or older to apply for a position on the Board of Directors.
✔ Time Commitment: Ability to dedicate 2-6 hours per month to board-related activities, with flexibility to contribute additional time as needed based on organizational requirements.
✔ Attendance at Fundraising Events: Attendance at a minimum of 5-8 fundraising events per year, including virtual events when applicable, to support the organization’s fundraising efforts and engage with donors and supporters.
✔ Social Media Promotion: Commitment to sharing information about the organization, its mission, events, and initiatives on personal social media channels to raise awareness and support for the organization’s goals.
✔ Committee Participation: Willingness to serve on board committees and actively contribute to committee work as needed, including attending committee meetings and collaborating with fellow committee members to achieve committee goals.
✔ Connection to the Cause: Demonstrate personal connection to the organization’s mission and cause, whether through personal experience, professional background, or a deep commitment to advocating for individuals with chronic, complex, and rare diseases because we want people who are truly passionate and connected to our cause and community.

QUALITIES WE EXPECT FROM OUR BOARD MEMBERS

We seek dedicated and passionate individuals to join our Board of Directors, who embody qualities that align with our mission and values. Our board members play a critical role in guiding our organization, advocating for our cause, and ensuring the success of our initiatives. To achieve this, we expect our board members to demonstrate qualities that align with our mission and values. 
Commitment to Our Mission: Our board members should have a genuine passion for our mission and a deep understanding of the challenges faced by individuals with chronic, complex, and rare diseases.
Integrity: We expect our board members to act ethically, transparently, and honestly in all their dealings and uphold the highest standards of accountability and responsibility, ensuring that their actions align with our values and goals.
Collaborative Spirit:  We value board members who can work well with others, respect diverse perspectives, and build strong partnerships within and outside our organization to achieve common goals.
Leadership: We seek board members who can inspire, motivate, and influence others, demonstrating strong leadership skills in both their professional and volunteer activities.
Communicative: Board members should be able to articulate ideas clearly, listen actively to others, and engage in open and respectful dialogue. 
Passionate About Our Cause: Board members should demonstrate a deep and unwavering passion for our mission to advocate for our community. 

application process

1. Submit Application Form: Complete the application form and submit it along with your resume and references. Our team will review your application to assess your qualifications and fit for the board.
2. Notification of Progress: After reviewing your application, we will notify you if we decide to move forward in the process. Selected candidates will receive an invitation for a Zoom interview.
3. Zoom Interview: Participate in a Zoom meeting with some of our current board members. This interview will provide an opportunity for you to learn more about our organization and for us to get to know you better.
4. Board Vote and Notification: Our team will discuss and vote on your application at the next board meeting. You will be promptly notified of the outcome. If selected, we will welcome you onto the board and begin the onboarding process!

common questions

What Is The Role Of The Board Of Directors?
At this time, our Board of Directors positions are voluntary as we focus on establishing our organization and raising the necessary funds to support our mission. We deeply value the time, expertise, and dedication our board members bring to our cause, understanding that their contributions are vital to our growth and success. 
While these roles are unpaid, we are committed to recognizing and appreciating the invaluable efforts of our board members. As we grow and secure more funding, our goal is to transition to a model where we can compensate our board members for their hard work and commitment. 
What Are The Main Responsibilities Of A Board Member?
Board members play a crucial role in steering the strategic direction of our organization. Their responsibilities include engaging in strategic planning to set and achieve long-term goals, participating actively in fundraising efforts, and ensuring sound governance practices. Additionally, board members advocate for the organization’s mission and serve as ambassadors, promoting awareness and fostering partnerships. 
This involves attending board and committee meetings, contributing to policy development, supporting the executive team, and ensuring that the organization remains accountable to its stakeholders.
What Is An Advisory Committee, And How Does It Differ From The Board Of Directors?
Advisory committees provide specialized expertise and advice to support the organization’s projects and initiatives. Unlike the board of directors, advisory committee members do not have governance or fiduciary responsibilities. Instead, they offer insights and recommendations in areas such as marketing, legal, financial, or program development. 
Advisory committees are formed as needed to address specific issues or opportunities, and their members are selected based on their expertise and willingness to contribute. This structure allows the organization to benefit from a broader range of knowledge and experience without overburdening the board of directors. You can learn more about our advisory committees here
What Is The Time Commitment?
For a growing non-profit organization like ours, the time commitment for serving depends on your role, but will typically include:
• Board Meetings: Attending monthly board meetings, which may last 1-2 hours each. These meetings would be held virtually to accommodate various schedules.
• Events and Fundraising: Supporting and attending key organizational events, fundraisers, and community outreach activities, which could involve an additional 1-3 hours per month.
• Special Projects: Engaging in specific projects or initiatives that align with your expertise, which may vary in time commitment based on the project's scope and needs.
Approximate hours for different board member roles may vary, but approximately 2-6 hours a month. 
How Often Does The Board Meet?
The board meets on a monthly basis, with each meeting typically lasting between one and two hours. In addition to these monthly meetings, there are quarterly meetings that might be longer to address more comprehensive agendas, and one annual face-to-face meeting designed to foster deeper discussions and strategic planning. 
Committee meetings are scheduled as needed, generally on a monthly basis, to address specific areas such as governance, development, finance, and program activities. This regular meeting schedule ensures consistent oversight and active involvement in the organization’s operations and strategic direction.
What Happens If I Have To Resign From My Role Or Miss Board Meetings/Events?
We completely understand! We know life can be unpredictable because things happen and come up all the time! We are extremely flexible and given that much of what we do is virtual, we are able to record meetings, make accommodations and work with you to make it work! If you find though that it is not the right fit for you, you just have to let us know and we will find a replacement. So please, do not let that hold you back from applying. 
Are Board Members Paid?
At this time, our Board of Directors positions are voluntary as we focus on establishing our organization and raising the necessary funds to support our mission. We deeply value the time, expertise, and dedication our board members bring to our cause, understanding that their contributions are vital to our growth and success. 
While these roles are unpaid, we are committed to recognizing and appreciating the invaluable efforts of our board members. As we grow and secure more funding, our goal is to transition to a model where we can compensate our board members for their hard work and commitment. 
How Long Is The Term For A Board Member?
Board members serve a term of two years, which can be renewed based on performance and mutual agreement. This structure ensures a balance between continuity and the infusion of new ideas and perspectives. We aim for a diverse and dynamic board composition, mixing experienced members with fresh talent to maintain an innovative and effective governance team. 
Term limits also provide an opportunity for board members to reassess their commitments and for the organization to recruit new members who can contribute to its evolving needs and goals.
Are There Any Fundraising Expectations For Board Members?
For a growing non-profit organization like ours, the time commitment for serving depends on your role, but will typically include:
• Board Meetings: Attending monthly board meetings, which may last 1-2 hours each. These meetings would be held virtually to accommodate various schedules.
• Events and Fundraising: Supporting and attending key organizational events, fundraisers, and community outreach activities, which could involve an additional 1-3 hours per month.
• Special Projects: Engaging in specific projects or initiatives that align with your expertise, which may vary in time commitment based on the project's scope and needs.
Approximate hours for different board member roles may vary, but approximately 2-6 hours a month. 
What Kind Of Training And Support Do Board Members Receive?
New board members are welcomed with a comprehensive orientation program that includes an overview of the organization, its mission, programs, and governance structure. This initial training ensures that new members are well-prepared to contribute effectively from the start.
Our goal is to equip all board members with the knowledge, skills, and resources they need to fulfill their duties successfully and to feel supported in their roles.
Can Board Members Serve On Committees?
Absolutely. We encourage board members to join and actively participate in one or more of our standing committees. Serving on a committee allows board members to leverage their expertise in specific areas and contribute more directly to the organization’s goals. 
Committee work typically requires an additional two to four hours per month, depending on the projects and initiatives being undertaken. This involvement not only enhances the board’s effectiveness but also provides board members with a deeper engagement in the organization’s operations.
Is There A Term Limit For Board Members?
Yes, board members serve a term of two years, which can be renewed based on performance and mutual agreement. This structure ensures a balance between continuity and the infusion of new ideas and perspectives. We aim for a diverse and dynamic board composition, mixing experienced members with fresh talent to maintain an innovative and effective governance team. 
Term limits also provide an opportunity for board members to reassess their commitments and for the organization to recruit new members who can contribute to its evolving needs and goals.

SUBMIT YOUR APPLICATION

We welcome all inquiries and press requests aimed at shedding light on our mission and initiatives in chronic, complex, and rare disease advocacy and healthcare reform. Whether you’re interested in conducting an interview, hosting a podcast episode, producing a YouTube video, or featuring us in an article, we’re here to assist you every step of the way! Simply fill out the form below with your details and requirements, and we’ll get back to you promptly to discuss how we can collaborate to spread awareness and make a difference!

BOARD MEMBER APPLICATION

MEET OUR CURRENT BOARD

Just applied or still thinking about it? Want to get familiar with the stories, experiences and perspectives of the current board? We got you! 
From healthcare professionals with firsthand experience in treating individuals with chronic, complex, and rare diseases to seasoned advocates with a deep commitment to healthcare reform, our board members are dedicated to advancing our mission and serving our community. 
By exploring their backgrounds, expertise, and personal journeys, it might help you decide on whether applying to be on the board is something you want to do and/or get you excited for what you could be joining! 
MEET OUR BOARD