Johns Hopkins &


How SADS and Hopkins Collaborate to Help ARVC Families

In 2021, the SADS Foundation entered a joint collaboration with the Johns Hopkins Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) Program in Baltimore, Maryland to support individuals and families living with ARVC. The Johns Hopkins ARVC Program is internationally recognized as the largest clinical and research center dedicated to ARVC. 

We’ve had a wonderful relationship with the Johns Hopkins ARVC Program ever since. We often hear from those with ARVC wondering how both organizations can help support their family, and which resources each organization offers. Here are some answers to your questions.

What resources does the SADS Foundation offer, and what resources does the Johns Hopkins ARVC Program offer?

The SADS Foundation

“Our collaboration with the Johns Hopkins ARVC/D Program has been extremely successful, and very beneficial to families with ARVC,” says Alice Lara, CEO and President of the SADS Foundation. “We are delighted to continue working with them on a monthly basis, to participate in their yearly conference, to include them in our resources for those with ARVC, and to continue to find new ways to work together that benefit families with this condition.” 

The SADS Foundation is a patient advocacy nonprofit organization founded to save the lives and support the families of those with genetic heart conditions like ARVC. As a patient advocacy nonprofit, here are some of the resources available from the SADS Foundation:

  • Our ARVC ICD Support Group for those with ARVC and an ICD, which meets monthly via Zoom
  • One-on-one support, including connecting families for social support and helping answer questions between appointments
  • Free educational webinars about ARVC, including the basics of ARVC, heart failure, and heart transplant (both clinical and patient perspectives)
  • Materials to spread awareness – including one-pagers to give to friends and family to explain your diagnosis, graphics to share on social media, and awareness campaigns you can join throughout the year to help educate others in your community
  • Referrals to expert ARVC physicians
  • Our groundbreaking EL-PFDD for ARVC, which helped educate the FDA, researchers, biopharma companies, and other stakeholders about the need for improved treatments for ARVC
  • Connect ARVC families to new and emerging research and clinical trial opportunities

From the left: Marcia Baker, Alice Lara, Brittney Murray, Crystal Tichnell, Jan Schiller, and Genevie Echols from the SADS Foundation and Johns Hopkins University ARVC/D Program.

The Johns Hopkins Arrhythmogenic Right Ventricular Dysplasia (ARVD) & Cardiomyopathy (ARVC) Program

“Working with SADS has allowed us to support our patients in even more ways. Because we are clinicians, we have legal limits on how much connection and support resources we are able to provide to patients,” says Brittney Murray, MS, CGC, Genetic Counselor at Johns Hopkins Hospital, Baltimore, Maryland. “Working with SADS has been such an added benefit of being able to expand the ways that we can work with families living with ARVC.”

The Johns Hopkins ARVD/C Program was established in 1999 through the combined efforts of several families and a team of cardiologists from Johns Hopkins. When the program was established we identified three goals for the program. The first goal was to provide education for patients, families, and physicians about ARVD/C. A second goal was to facilitate the evaluation and management of patients with known or suspected ARVD/C. And the third, and perhaps most important goal was to provide new knowledge about ARVD/C. Our ultimate goal is to cure and/or prevent ARVD/C.   

Here are some of the resources available from the Johns Hopkins University ARVC Program:

  • JHU ARVC Program is the world’s leading clinical program for expert management of individuals and families with ARVC. We offer clinical care and expert second opinions to make sure our patients and their families are getting the most evidence-based care.
  • We are the hub of a large international research program.  We lead and collaborate with all the world’s expert on all aspects of ARVC and we aim to partner with patients and their families to connect them to these opportunities.
  • We aim to provide up to date new research and information to help patients be their own advocates.  
  • We present at many national cardiology conferences in an effort to educate physicians and other health professionals managing the care of ARVC patient. 
  • We host an annual patient/family seminar to share new information, provide opportunities to participate in research, and more importantly, provide opportunities for those impacted by ARVC to meet and learn from others also Our annual patient/family seminar is purposefully geared toward giving the newest information to the patients to take back to their families and even physicians .



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How do SADS and the Johns Hopkins ARVC/D Program work together to support those with ARVC?

At the SADS Foundation, we frequently refer patients to the expert clinical care at the Johns Hopkins ARVC/D program, and connect patients to research opportunities at Johns Hopkins. We also attend the ARVC Patient and Family Seminar that Johns Hopkins holds annually.

The expert staff at the Johns Hopkins ARVC/D Program have a strong presence in our educational materials at the SADS Foundation, including our free educational webinars and our annual in-person and virtual conferences. The team at the Johns Hopkins ARVC/D Program also often refers patients to the SADS Foundation for out-of-hospital support, including support groups.