Bloomington, MN

PCD KS FOUNDATION

EIN 20-0543474

Health & Wellness Medical Research & Training Patients & families

Mission

To provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health, and ultimately a cure for primary ciliary dyskinesia (PCD).

IRS-recognized 501(c)(3) public charity Contributions are tax-deductible

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About PCD KS FOUNDATION

PCD KS FOUNDATION (also listed publicly as PCD Foundation) is a U.S. 501(c)(3) nonprofit based in Bloomington, Minnesota. The organization's EIN (20-0543474) corresponds to the PCD Foundation and its tax-exempt status has been on public record since 2004.

The foundation focuses on advancing research, accelerating diagnosis, and improving clinical care and patient support for people affected by primary ciliary dyskinesia. Core programs include a Clinical & Research Centers Network, a patient registry to support research and trial readiness, targeted research grantmaking, and patient/caregiver education and outreach.

In the last 2–3 years the organization has continued to expand research support and grantmaking, maintained and promoted its registry and clinical network, and convened clinicians and researchers through its 'PCD on the Move' conferences. Recent filings indicate multi-million-dollar operating scale and active grant awards to academic and clinical research centers in support of PCD research and clinical programs.

Notable achievements

Clinical & Research Centers Network

Built and supports a multi-site Clinical & Research Centers Network of expert centers in North America to improve diagnosis, care coordination, and clinical research capacity for PCD patients.

PCD Patient Registry

Operates and maintains the PCD Foundation patient registry to collect standardized clinical data that informs research, natural history studies, and trial readiness.

Targeted Research Grantmaking

Provided multi-institution research funding and research awards in recent years, including six-figure grants to academic clinical centers to accelerate PCD research and trials.

At a glance

Total assets: $3.6M
Annual revenue: $2.0M
Tax status: 501(c)(3)Public charity
EIN: 20-0543474
Location: Bloomington, MN
Website: www.pcdfoundation.org
On Mahalo since: September 2026

Financial figures from the IRS Business Master File, the IRS’s registry of tax-exempt organizations.

Recognition

Partner and active participant in rare-disease research initiatives and clinical research networks; leadership has served on NIH-related advisory groups and national clinical meeting programs.

Maintains publicly available Form 990 filings and is listed in major nonprofit/charity databases (reflecting transparent financial reporting and grantmaking activity).

Organizer and sponsor of the recurring 'PCD on the Move' conference and other national meetings that convene clinicians, researchers, and patient representatives.

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