Supporting Patients

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We are creating a global RUNX1-FPD community.

As the only advocacy group for RUNX1-FPD, we provide one-on-one support to patients and their families who reach out to us.

We have chosen RareConnect as our trusted social media platform to provide a place for patients and their families to forge connections. We look to patients to help us understand the issues that affect RUNX1-FPD patients, so we can aim to address them.

We are creating a global community of patients, healthcare providers and researchers to promote advocacy and conversation, provide resources and education, and to foster clinical research.

Our site aims to be a central resource for current information and resources, to help all stakeholders learn about the disorder. We hope to empower patients to be their own personal health advocates, and to help us increase the public’s awareness of hereditary blood cancers.



Breaking New Ground

The NIH has just initiated the first-ever longitudinal natural history study of RUNX1-FPD patients, with the aim of better understanding the clinical features of the disease, how these may relate to the different germline mutations and why some patients progress to blood cancer and others do not. This is a groundbreaking study and essential in our effort to find a cure.