RARE Project Network

Turning Passion into Action—One Semester at a Time

The RARE (Rare Disease Advocacy & Research Engagement) Project Network connects teams of Notre Dame students with rare disease patient organizations to tackle meaningful advocacy projects throughout each spring semester. Working in interdisciplinary teams, students contribute real-world deliverables while gaining hands-on experience in patient advocacy, communication, and nonprofit collaboration.

What is the RARE Project Network?

Unlike a traditional internship or volunteer opportunity, the RARE Project Network allows dozens of students to contribute to meaningful patient advocacy work each semester, while balancing their academic schedules.

Each participating organization proposes a project that addresses an authentic need their organization is currently facing. Student teams—led by trained Student Directors— then work alongside selected organization mentors to develop resources, educational materials, outreach campaigns, research summaries, patient support tools, and other advocacy projects.

Every project is designed to benefit both students and the rare disease organization.

The RARE Project Network is best suited for organizational partners who have a clearly defined, time-bound project with deliverables that students can successfully finish in one semester (early February-mid April).

How it Works

1. Organizations Submit Projects: Patient advocacy groups (PAGs) submit identify a need and propose a specific project (with articulated deliverables) through an application process each fall.  The organization will select a specific category their proposed project belongs to. The categories are:
   • Research, Data & Knowledge Translation
   • Patient Engagement & Communications
   • Organizational Strategy & Advocacy
2. Student Teams are Formed: Students from across Notre Dame apply to participate as either a student director (students from the minor) or as a student member (any student at ND). Teams are then matched to selected PAGs based on interests, skills, and availability.
3. Projects in Progress: Teams meet regularly throughout the semester while collaborating closely with their PAG community partner.
4. Projects are Completed: Final deliverables are shared with the PAG partner by the end of the spring semester and students present their work at an annual RARE Project Network Showcase.

2027 Program Timeline

PAG Application Cycle: October 12 – October 30, 2026

Notification Date: No later than November 20, 2026

Project Timeline: Approximately February 3 – April 23, 2027 (~10 working weeks). Student teams will present their project deliverables on Monday, April 26, 2027.

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