-

Heart Valve Voice US Announces Major Initiatives for Valve Disease Day Including My Valve My Voice Community App, Caregiver Event

WASHINGTON--(BUSINESS WIRE)--Heart Valve Voice US, a nonprofit patient advocacy organization, is launching a new mobile app for its popular My Valve My Voice patient community. The app, now available for iOS and Android users, is among several initiatives for American Heart Month and Valve Disease Day announced today by the organization.

“The My Valve My Voice app represents the evolution of our patient community to provide easier access to support services, educational resources, and research opportunities for patients and care partners,” said Susan Strong, Director of Patient Engagement for Heart Valve Voice US.

As part of a virtual conference on Valve Disease Day, February 22, Heart Valve Voice US is conducting a webinar focused on the importance of care partner support titled "Navigating the Patient/Care Partner Journey." Please register here.

Also, during this American Heart Month, Heart Valve Voice US is:

  • Introducing a series of 10 videos featuring John, a TAVR recipient, and his spouse Kathi, a care partner. The videos walk patients through the complex decisions that go into choosing the right treatment option, the importance of caregivers, and the value of peer-to-peer support for both patients and care partners;
  • Unveiling a comprehensive “Resources for Your Journey” section of its website to provide a curated “best of” collection of educational materials and tools to support patients at every step of their journey, from first experiencing symptoms through analyzing treatment options to caregiver support. Resources also include links to directories of imaging specialists, cardiologists, and surgeons from leading medical societies;
  • Expanding clinical trial services, from patient preference surveys and focus groups to complete patient recruitment services in partnership with Antidote.

“Our goal is to provide patients and their care partners with the highest quality information from the most reliable sources; not limited ‘sponsored’ content,” said John Lewis, Executive Director of Heart Valve Voice US. “We will never charge patients for access to these resources and services, or sell their information,” said Lewis.

Heart Valve Voice US is also pleased to announce it has added two new Board members: Chandra Branham, Senior Vice President and Head of Payment and Health Care Delivery at AdvaMed; and Elizabeth Perpetua, DNP, FACC, Founder of Empath Health, Associate Editor Structural Heart Journal, and a nursing educator.

“We are thrilled to welcome Chan and Liz to our Board as their respective expertise complements our current directors, who represent patient advocates, health policy experts, and leading clinicians in the field of structural heart disease,” said Donnette Smith, Board Chair. “We thank Candace DeMatteis for her participation on the Board and for serving in the role of Executive Director in the early days of the organization.”

Lewis added that, in addition to the initiatives announced today, the organization this year will be working to map the patient journey, launch a campaign to promote screening for heart valve disease, undertake actions to increase diversity in clinical trials, and build a community for Structural Heart Clinic Coordinators.

ABOUT HVV US

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.

Contacts

John Lewis
Heart Valve Voice US
202-285-5726
john@heartvalvevoice-us.org

Heart Valve Voice US


Release Summary
Heart Valve Voice US is launching a mobile app for its My Valve My Voice patient community, a webinar, other initiatives for American Heart Month.
Release Versions

Contacts

John Lewis
Heart Valve Voice US
202-285-5726
john@heartvalvevoice-us.org

Social Media Profiles
More News From Heart Valve Voice US

Heart Valve Voice US Praises Nomination of Dr. Robert Califf as FDA Commissioner

WASHINGTON--(BUSINESS WIRE)--John Lewis, Executive Director of Heart Valve Voice US, issued the following statement regarding the nomination of Dr. Robert Califf to lead the Food and Drug Administration: “As an organization that advocates for heart valve patients, we see Dr. Califf, a cardiologist, as an excellent choice to again lead the FDA. Rob is not only a world-renowned cardiologist and researcher, but he truly understands our public health challenges and sincerely cares about issues of h...

#JustGo Campaign PSA Encourages Heart Valve Patients To Follow Up on Care

WASHINGTON--(BUSINESS WIRE)--Heart Valve Voice US has released a public service announcement (PSA) as the second phase of its #JustGo campaign....

Heart Valve Voice US to Train Patients As Research Advisors and Advocates

WASHINGTON--(BUSINESS WIRE)--Heart Valve Voice US—a patient-advocacy organization focused on improving the diagnosis, treatment, and management of heart valve disease—is pleased to introduce an intensive, virtual program to train patients and care partners to become research advisors and advocates. The program – Valuing Advocates’ Lives, Voices and Experience (VALVE) in Research – will be the basis for the creation of the heart valve disease research network (HVD Network). This training is bein...
Back to Newsroom