Organizational Milestones

Collaborate, Research, Organize

Through close collaboration with families, researchers, and other organizations working within the rare disease community, we have accomplished the following:

Received a $50k operations award from the Chan Zuckerberg Institute

Partnered with Players Philanthropy Fund for fiscal sponsorship

Launched a patient-owned database with RARE-X, enabling us to house and share our data with researchers

Attained our 501(c)3 non-profit status with the United States Internal Revenue Service (IRS)

Built our leadership up to include a Medical Scientific Advisory Board and Community Outreach Program

Looking Forward - As we look to the future, we are focused on: