The Sudden Arrhythmia Death Syndromes (SADS) Foundation – a Patient Worthy partner – was founded in 1991 to provide support and care for people affected by heart arrhytmia conditions that can lead to sudden death, such as long QT syndrome (LQTS) or catecholaminergic polymorphic ventricular tachycardia (CPVT). Sudden arrhythmia death syndromes (SADS) are genetic heart conditions that can cause sudden death in people who are young and apparently healthy.  However, with interventions, these conditions can be treated and managed.

Support the SADS Foundation EL-PFDD Meeting

In addition to providing support to families and patients, the SADS Foundation also advances research into SADS, as well as potential treatment options. Recently, the SADS Foundation shared that on June 11, 2024, the Foundation will be meeting with the U.S. Food and Drug Administration (FDA). The SADS Foundation explains that the meeting will center around the urgent need for new and improved treatments for Long QT Syndrome and CPVT.

Patients and their families can speak during the EL-PFDD meeting to share their experiences living with long QT syndrome or CPVT with multiple stakeholders, from medical researchers and biopharmaceutical leaders to members of the FDA. The SADS Foundation shares that there are multiple ways to members of the SADS community can participate, from live panel discussions to pre-recorded story-sharing opportunities. You can sign up for the SADS Foundation’s newsletter for more information and updates leading up to the EL-PFDD meeting. Additionally, if you are ready to pre-register for the meeting, you may do so here.

If you cannot come to the EL-PFDD meeting, there are still ways to participate. Consider donating to the SADS Foundation. It takes $140,000 to get the meeting set up. Every dollar counts towards making a difference for this community. Your donation would be vital in advancing an understanding of the needs of those with sudden arrhythmia death syndromes.