Waltham, Mass.– Affinia Therapeutics has announced a new partnership with the DCM Foundation and the Genetic Cardiomyopathy Awareness Consortium (GCAC) to raise awareness about BAG3 dilated cardiomyopathy (DCM), a severe genetic heart condition that can lead to early-onset heart failure and, in many cases, heart transplantation. The initiative focuses on promoting early diagnosis and encouraging broader adoption of genetic testing to help save lives.
BAG3 DCM is a monogenic form of dilated cardiomyopathy affecting over 70,000 people across the U.S., Europe, and the U.K. The disease is caused by mutations in the BAG3 gene, which disrupt the production of a protein essential to heart cell function. Despite current treatments, nearly a quarter of patients eventually require a heart transplant. Research published in the journal Circulation suggests that almost half of all cardiomyopathy cases have a genetic origin, but genetic testing remains underutilized among diagnosed patients.
Affinia and its partners aim to change that through a collaborative campaign that includes patient engagement, education, and access to testing. A newly formed BAG3 Patient Advisory Council will provide patient-centered insights to guide research and clinical development. The initiative also includes an educational webinar series focused on genetics and cardiovascular disease, with updates on Affinia’s lead investigational therapy, AFTX-201—a one-time AAV-based gene therapy injection currently being developed for BAG3 DCM.
“This partnership represents an important opportunity to improve outcomes for people living with this devastating disease,” said Greg Ruf, founder and executive director of the DCM Foundation. “By increasing access to genetic testing, we can identify at-risk patients earlier, help families understand their condition, and accelerate the development of targeted treatments.”
Dr. Hideo Makimura, Chief Medical Officer of Affinia, emphasized the urgency of addressing the diagnostic gap. “Too many patients with genetic forms of cardiomyopathy, like BAG3 DCM, are going untested. This delay can be life-threatening. Through this collaboration, we aim to raise awareness and promote testing so patients can get the care they need sooner.”
Affinia CEO Rick Modi called the partnership a milestone for the company as it advances AFTX-201 toward regulatory submission and clinical trials. “Our mission is to make a meaningful difference for people living with genetic diseases. Working alongside the DCM Foundation and GCAC allows us to accelerate that goal for those affected by BAG3 DCM.”
