Heart Valve Voice US, a patient advocacy organization focused on improving the diagnosis, treatment and management of heart valve disease, today launched the “My Valve My Voice” patient community.
“The My Valve My Voice community is designed to maximize support and interaction among patients while also providing tools and resources to them and their care partners,” said Donnette Smith, Chair of Heart Valve Voice US. “This is an exciting step in the growth and evolution of our organization as we better position ourselves to serve the 11 million people who live with this disease.”
My Valve My Voice is a destination for those who have been diagnosed with, treated for, or just curious about the disease and its symptoms, as well as for care partners who are looking for ways to support their patient. Additionally, Heart Valve Voice US has partnered with Antidote to provide a user-friendly tool for patients to find clinical trials that may be appropriate for them. Additional functionality will be rolled out in the coming months.
“This community serves three of our primary objectives,” said John Lewis, Executive Director of Heart Valve Voice US. “First, and most importantly, it enables us to better serve patients and their care partners. Second, as we build out planned sub-communities focused on co-existing conditions, we will broaden our reach and fundraising ability. Finally, longer-term, we plan to develop a vibrant grassroots advocacy community to support policy initiatives important to patients.”
Lewis added that the community will also facilitate research, such as connecting patient advisors to research sponsors seeking patient input. On a limited basis, Heart Valve Voice US will also support surveys of the patient community that are designed to better understand patient preferences for diagnosis and treatment. Tools for gathering patient-reported outcomes (PRO), registry services, and provider matching are also envisioned.
“We are ecstatic to provide a community in which patients can feel understood and supported,” said Susan Strong, Director of Patient Engagement. “We understand the importance and need for patients and care partners to be able to connect with others who have similar experiences. We encourage anyone who is looking for support to join our community and look forward to receiving feedback so we can continually evolve the community to best meet patient needs.”
Heart Valve Voice US, a nonprofit patient advocacy organization, provides a united voice for people living with heart valve disease. We advocate for early detection, meaningful support, and timely access to appropriate treatment for all people affected by heart valve disease. www.heartvalvevoice-us.org.