From Invisible to Understood

Bringing visibility, language, and community to a too-often invisible diagnosis.

Myeloproliferative neoplasms — myelofibrosis, polycythemia vera, essential thrombocythemia, and systemic mastocytosis — affect daily life in ways the world rarely sees. From Invisible to Understood is a Signature Program in development to change that, in partnership with patients, caregivers, clinicians, and researchers.

Join the Movement MPNs (MF, PV, ET, SM) Resources Support This Program

The Problem

MPN patients live with a disease most people have never heard of.

Delayed diagnoses, fragmented information, and limited public awareness leave MPN patients carrying a heavy invisible load. We want to change the conversation — for patients, families, and the clinicians who care for them.

Coming soon

Estimated U.S. patients living with MPNs

Coming soon

Average time from first symptom to diagnosis

Coming soon

Patients reporting an unmet information need

Note: figures to be verified against ACS / NCI / disease foundation sources before launch.

The Movement

Built on four pillars.

Fiscal Sponsorship · Patient Education · Community Connectivity · Real-World Evidence. Every Signature Program is grounded in the same four pillars that power PatAdvHub.

Fiscal Sponsorship

Patient Education

Community Connectivity

Real-World Evidence

Voices Leading the Movement