Board Member

Mission

The APDS Rare Disease Coalition is a patient-led nonprofit dedicated to improving the lives of individuals and families affected by APDS (Activated PI3K Delta Syndrome), an ultra-rare primary immunodeficiency. We are committed to increasing awareness, providing education and support, fostering meaningful connections within the rare disease community, and advancing advocacy and research. Through collaboration with patients, caregivers, healthcare professionals, researchers, and industry partners, we strive to ensure that no one affected by APDS has to navigate their journey alone. Our vision is a future where every person living with APDS has access to timely diagnosis, quality care, supportive resources, and hope.

About Us

The APDS Rare Disease Coalition is a growing, patient-led nonprofit organization dedicated to serving individuals and families affected by Activated PI3K Delta Syndrome (APDS), a rare primary immunodeficiency that is often underrecognized and misunderstood.

Because APDS is so rare, many patients experience delayed diagnoses, limited access to knowledgeable providers, and feelings of isolation. We are working to change that by increasing awareness, providing reliable educational resources, connecting patients and caregivers with one another, and advocating for improved care, research, and earlier diagnosis.

Our organization is built on the values of compassion, collaboration, integrity, inclusion, and hope. We believe that every voice matters and that meaningful change happens when patients, caregivers, healthcare professionals, researchers, and advocates work together.

As a growing nonprofit, we are expanding our programs and partnerships while planning awareness events, educational initiatives, fundraising efforts, and community outreach. We welcome individuals from all backgrounds who are passionate about making a difference—even if they have no previous connection to APDS or rare diseases. Every skill, perspective, and lived experience can help strengthen our mission and create lasting impact for our community.

Position Description

The APDS Rare Disease Coalition is seeking passionate, dedicated volunteer board members to help shape the future of our national patient-led nonprofit. Our mission is to improve the lives of individuals and families affected by Activated PI3K Delta Syndrome (APDS) through education, advocacy, awareness, community support, and collaboration.

As we continue to grow, we are looking for board members who are excited to contribute their skills, ideas, and time to help build a stronger organization and expand our impact within the rare disease community.

We are seeking active, engaged board members who are excited to help shape the future of a growing nonprofit. This is a hands-on leadership opportunity where your ideas, expertise, and contributions will directly influence our impact.

Responsibilities

• Attend regularly scheduled virtual board meetings (currently held every other week).
• Actively participate in board discussions and organizational planning.
• Serve on at least one committee or lead projects related to your expertise.
• Support fundraising, sponsorships, grant opportunities, and community outreach efforts.
• Help increase awareness of APDS and represent the organization positively within your professional and personal networks.
• Contribute your knowledge, experience, and ideas to help strengthen the organization.
• Assist with strategic planning, partnerships, awareness events, and special initiatives.

Qualifications

We welcome applicants from a variety of backgrounds and experiences. Previous nonprofit board experience is helpful but not required. We encourage individuals with expertise in areas such as:

• Fundraising and development
• Finance or accounting
• Law or nonprofit governance
• Marketing and communications
• Healthcare or research
• Event planning
• Corporate partnerships
• Human resources
• Business leadership
• Patient advocacy or lived experience with rare disease

We value reliability, initiative, and a willingness to actively contribute more than previous board experience.

Candidates should be collaborative, dependable, proactive, and committed to advancing the mission of the organization.

Time Commitment

Approximately 2–4 hours per week, including biweekly virtual board meetings, committee work, and organizational initiatives. Additional involvement is welcome based on your interests and availability.

We understand our board members have other professional and personal commitments; however, we ask that applicants be prepared to participate consistently and communicate openly if their availability changes.

Why Join Our Board?

Joining the APDS Rare Disease Coalition is an opportunity to make a meaningful difference in the lives of individuals and families affected by a rare disease. As a growing organization, board members have the opportunity to help shape our future, expand awareness, strengthen patient support, build strategic partnerships, and advance advocacy and research.

Whether you have professional expertise, personal experience with rare disease, or simply a passion for creating positive change, we would love to hear from you.