Project Title: Strategic Advocacy and Policy Initiative for the Rare Disease Community
National Bleeding Disorders Foundation, CO Chapter
| Details | |
|---|---|
| Project Title | Strategic Advocacy and Policy Initiative for the Rare Disease Community |
| Project Topics | Corporate Social Responsibility Political Organization, Policy Change, and Advocacy Research, Analysis, Evaluation Strategic Planning |
| Skills & Expertise | Advocacy Strategy Development Communication and Presentation Skills Community Engagement Data analysis Financial Impact Assessment Healthcare Policy Evaluation Legislative Research Policy Analysis Project Management Public Health Research Qualitative Research Methods Regulatory Compliance Risk Assessment Stakeholder Engagement Strategic Planning |
| Project Synopsis: Challenge/Opportunity | The National Bleeding Disorders Foundation, CO Chapter, is dedicated to advocating for individuals with rare bleeding disorders and enhancing their quality of life. The foundation excels in community engagement, creating awareness, and providing support and resources to patients and families. However, they face significant challenges in navigating the evolving policy landscape that threatens access to affordable and sustainable healthcare for the rare disease community. The specific challenge involves the convergence of several policy changes in 2026 that could have catastrophic impacts on the rare disease community. These include the growth of the Prescription Drug Affordability Board, the emergence of Alternative Funding Programs, Medicaid disenrollment, and the threat to Copay Accumulator Adjustors. These challenges undermine plan protections, shift costs onto patients, and jeopardize access to life-sustaining treatments. The current impact is a growing uncertainty and risk for the community, threatening the foundation's mission and the well-being of those they serve. This project provides an opportunity for students to address these challenges through strategic advocacy and policy change initiatives. The project will be divided into phases, including research and analysis, stakeholder engagement, strategy development, and policy recommendation formulation. Students will have the chance to apply their skills in a real-world context, enhancing their understanding of healthcare policy and advocacy while delivering tangible value to the foundation. This project is ideal for students as it combines academic learning with real-world application, allowing them to explore the intersection of healthcare policy, corporate social responsibility, and advocacy. It offers a dynamic learning environment where students can develop strategic thinking, policy evaluation, and stakeholder engagement skills. For students aspiring to careers in healthcare management, policy, or advocacy, this project provides a meaningful exploration of critical challenges and the opportunity to make a positive impact on the rare disease community.
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Project Timeline
| Touchpoints & Assignments | Date | Type |
|---|---|---|
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Program Kickoff |
Sep 12 2025 | Event |
Program Managers
| Name | Organization |
|---|---|
| Tiffany Charbonier | New York University (NYU) |
Teams
| Team Name | Project Name | Team Members |
|---|---|---|
| No Teams Available |