Our Research Impact

How We Support Researchers

We serve as the critical link between patients, healthcare providers, and researchers, working with world-class scientists and young researchers in the field to create a brighter future for those living with SADS conditions. Through granting our annual Young Investigator Awards in Cardiac Channelopathy Research – a program we began in 2008 – we encourage young SADS researchers across the globe to advance research that can help improve diagnosis and treatment for families with SADS conditions. We also help researchers, healthcare providers, and scientists share their knowledge through our conferences and medical education seminars.

In addition, as the only advocacy organization devoted to channelopathies, we connect our database of over 10,000 affected families with academic researchers and companies in biotech, drug development, and genetics who count on us to find patients to participate in their studies. Each study that comes to us goes through a vigorous vetting process to ensure that it’s in the best interest of our community.

Our disease-specific communities also help identify previously unrecognized questions for researchers. Most physicians have only a few SADS patients, which makes it difficult for them to identify questions for research that may lead to diagnostic, management or treatment breakthroughs. Our families provide us with information and insights that can lead to new research questions, which benefit the researchers, our families, and the healthcare providers who care for them.

We support research because we know there are still people struggling on their medical journey. By providing that critical link between our patient community and the researchers and organizations who are working hard to make a difference in future diagnosis and treatment, we are committed to helping our families live longer, live better – and even find a cure.