Annual and periodic e-newsletters reporting on research milestones, fundraising events and patient resources. This communication keeps the patient, researcher and physician communities updated on DTRF’s efforts and progress in the field.

The DTRF Patient Registry is a collaborative effort between The Desmoid Tumor Research Foundation (DTRF) and the National Organization for Rare Disorders (NORD) to study desmoid tumors. The DTRF was selected by NORD to create The DTRF Patient Registry as part of a cooperative project between NORD and the U.S. Food and Drug Administration (FDA) that supports research on rare diseases and how they progress over time – natural history studies.

This event brings together a diverse group of scientists including the brightest minds in desmoid tumor research, human genetics, drug development and related fields. The workshop facilitates an enthusiastic and collegial atmosphere as researchers across disciplines and institutions collaborate around the shared goal of improving treatments for desmoid tumor patients, establishing research priorities and moving the field forward toward a cure.

Learn more here.

A full day event for patients and caregivers, where attendees connect and participate in informative lectures and roundtables on desmoid tumors. This meeting takes place in late fall in Philadelphia.

Learn more here.

A peer-reviewed grant to collect preliminary data. These projects usually precede multi-year grant submissions.

Level 1: $5,000

Level 2: $10,000

Level 3: $15,000

A desmoid tumor research grant in basic science or a clinical trial at one of the world’s top cancer research centers.

Level 1: $10,000

Level 2: $25,000

Level 3: $50,000.