Rosenau Family Research Foundation

More details and formal registration to come. Email ktrn@rosenaufoundation.org with any questions.

We look forward to seeing you in March!

October's Featured Investigator

Robert Thompson Stone, MD, was awarded a $155,000 Rosenau Family Research Foundation grant in 2025 for his project titled “GenoKrabbe: A Comprehensive Genotype-Phenotype Database for Krabbe Disease”, which aims to establish the GenoKrabbe Database—a stakeholder informed, multi-institutional, web-based platform designed to collect, organize, and analyze data from individuals who screened positive for or were diagnosed with Krabbe Disease. This platform will allow for more accurate classification and prediction models for screen positive individuals, and improved counseling and decision-making regarding use of disease-modifying therapies. The project will help foster multi-institutional collaboration and strengthen connections across the Krabbe Disease community.

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NORD and Rosenau Family Research Foundation Launch Rare Research Launchpad

Rosenau Family Research Foundation (RFRF) is thrilled to announce that the National Organization for Rare Disorders (NORD) has launched its Rare Research Launchpad!

Funded by RFRF, the Rare Research Launchpad is a free, self-paced online course for undergraduate, graduate, and medical students, post-baccalaureate learners, and other early-career trainees.

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2025 Annual Report

The 2025 Annual Report reflects the continued commitment of Rosenau Family Research Foundation (RFRF) to improving the lives of individuals and families impacted by Krabbe disease and Cystic Fibrosis through research funding and advocacy.

View Report

Announcing: 2025 Grant Recipients

Congratulations to:
Hara Levy, MD, MMSc - University of Wisconsin, Madison
Chris Lee, PhD - Biomedical Research Institute of New Jersey
Natalia Gomez-Ospina, MD, PhD - Stanford University
Changfan Lin - Caltech
Venkata Sai Chaluvadi - University of Pennsylvania
Tom Brett, PhD - Washington University in Saint Louis
Robert Thompson Stone, MD - University of Rochester

Read the Full Press Release

RFRF is seeking candidates to fill additional roles on our Board of Directors

We are looking for a wide range of expertise to complement the knowledge of our current Board. Our Board members play a crucial role in the functioning of our organization, and ensuring that we are serving our grantees and the rare disease community in the most efficient, empowered way possible.

Get In Touch

A Word from Our Co-founder

Watch the video to learn more about how Rosenau Research Foundation came to be.

Watch the Video

Our Research Focus

Krabbe Disease

Krabbe disease is a severe, inherited, neurological condition. It is part of a group of disorders known as leukodystrophies, which result from the loss of myelin in the nervous system.

Learn More About Krabbe Disease

Cystic Fibrosis

Cystic Fibrosis is a severe genetic disease that causes lung infections and limits the ability to breathe over time and can keep the body from absorbing food.

Learn More About Cystic Fibrosis