Our team has decades of personal and professional experience in rare disease advocacy and support. As patients, caregivers, and advocates, we understand the challenges you and your family face.

ResearchMatch is a nonprofit program funded by the National Institutes of Health (NIH). It helps to connect people interested in research studies with researchers from top medical centers across the U.S.

NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.

Creating a multi-disciplinary network of diverse researchers to improve child health

The NICHQ Difference We challenge conventional thinking while never losing sight of practical solutions. We are hands on all the way. By bringing the best methods and tools for change and combining them with a high-touch collaborative approach for learning, teaching and adoption, we make the impossible possible. At the core of our success is extraordinary teamwork and a keen ability to genuinely listen to enable individuals and organizations to work for continuous improvement.

We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.