Rare Disease Day 2025 Family Foundations

Rare disease family foundations are a powerful force in advancing research, funding early-stage discoveries, connecting experts, advocating for change, and supporting families. This slideshow highlights 31 rare disease family foundations represented at PNRI’s Rare Disease Day 2025 scientific symposium—organizations that work tirelessly to:

• Fund early-stage research that may not receive government or industry investment
• Connect researchers, clinicians, and industry partners to accelerate treatment development
• Advocate for policies that prioritize rare disease research and patient support
• Build strong support networks for families navigating complex diagnoses and limited treatment options

Scan the QR codes in the slideshow to learn more about these incredible foundations and how you can support their work.

In this 60-second video from PNRI’s Rare Disease Day 2025 scientific symposium, two parents share why research matters—and how their lived experiences are helping to drive it forward. Their voices represent the strength, urgency, and hope at the heart of the rare disease community.