Lisa • February 28, 2023
HCMA/Nest Portal – HCMA Founder introduces you to a new way to get educated and stay engaged

We were excited to announce on HCM Awareness Day 2023 our new partnership with Nest Genomics, a provider of services that helps educate patients to achieve the best outcomes in care and shared decision-making. As the HCMA grows, we must find new ways to provide personal attention and scale up to the larger community we are serving. One of my personal challenges has been how to communicate effectively on topics that are critical to the patient journey experience, including why tests are needed, where they can be done most effectively, what these tests and procedures are, and provide these and other important items in a place you can revisit them later. Additionally, we wanted to create a way to update records effectively to prepare for navigation calls as well as provide updates on frequently asked questions, quick updates of changes in care guidelines, or educating people with new opportunities.

Nest is the KEY!

Lisa Salberg – Cheers

Here is an interview I had during HCM Awareness Day with Moran Snir, the founder/CEO of Nest Genomics. We review our goal for the Nest portal and how we work together.

More answers: Nest FAQ

I hope you are as excited about this new tool in our toolbox to help support you and the HCM community. Together, we can make things better for the diagnosed, find the undiagnosed, help with new treatment options, and learn together to save lives.

We are rolling it out in stages, so please be patient as we launch, but when we reach you, please don’t let our invitation to participate sit too long. We need to help over 10,000 people have their turn to join us in the HCMA Nest Portal. If you have questions, don’t hesitate to get in touch with our office: pm@4hcm.org

HCMA Blog

Lisa's Letter - July Newsletter

By Lisa Salberg • July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
An official seal in black & red with white letters that say HCMS Recognized Centers of Excellence

July's Topic is COE Care at the HCMA

By Sabrina Cuddy • July 3, 2025
Getting HCM care at a HCMA Recognized Center of Excellence has a positive impact on patient's outcomes. Find out why in the post by Health Educator Sabrina Cuddy

Pro Publica Releases Results of FDA Investigation

By Erica Friedman • June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
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