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:
- Continuing to provide supportive content that is responsive to the community’s needs
- Supporting Dr. Gholson Lyon’s natural history study of Ogden Syndrome patients
- Focusing on drug repurposing and drug development in an effort to uncover a treatment or cure for Ogden Syndrome
- Identifying outreach efforts to identify opportunities to participate in research, apply for grants, and collaborate with other rare disease organizations
- Expanding our reach and impact with the development of Foundation Chapters throughout the United States