Firefly Fund supporters believe every child deserves the opportunity to have a life filled with good health so that they can reach their full potential.

The Firefly Fund’s core programs serve patients, families and the clinical community with essential resources and support, advancing knowledge about the complexities of rare diseases.

With Your Help, We Can Make a Difference

Firefly Fund is committed to filling unmet needs in the rare disease community and not duplicating good work that has already been done. Your contribution will go directly toward Firefly Fund’s three core programs:

Early Diagnosis

Advance efforts to add rare diseases to newborn screening lists at state and federal levels. The Firefly Fund is dedicated to gathering evidence necessary to add rare diseases to NBS tests.


Support translational research and applied science with the goal of accelerating life-changing, life-saving therapies for rare and ultra-rare diseases.


Provide financial assistance for rare disease patients to alleviate burdensome medical and travel costs related to their diagnosis so they may gain timely, necessary and improved access.