Have you heard of antisense oligonucleotides (ASOs)? These short, synthetic strands of nucleic acids are designed to bind specifically to the mRNA transcripts of genes, blocking the production of disease-causing…
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…
2019 was an extremely difficult year for Jay Crow. In February of that year, Crow lost his mother Megan, who was just 33 years old, to heart failure. Just…
According to a recent article, the European Society of Cardiology has recommended that athletes undergo gene testing to prevent sudden cardiac death from exercise. Gene Testing Lethal variants can be…
According to a recent article, the sudden death of Cavan woman, Leah Farrelly, shocked her family, friends, and community after living with Long QT syndrome for 9 years. Long QT…
The Timothy Syndrome Alliance (TSA) has just announced that they will be collaborating with Pulse Infoframe to create a patient registry. This registry will increase our understanding of the CACNA1C…
Long QT syndrome (LQTS) is a rare condition that's characterized by fast and chaotic heartbeats. Episodes have the potential to cause fainting, seizures, or even death. Because of this, affected…
Alexis Loveless is a 14-year-old from Louisville, KY who was recently diagnosed with Long QT syndrome. Now, she's doing her best to raise awareness by sharing her own story of…
According to a story from mdlinx.com, a recent study has found that around 20 percent of sudden cardiac death cases in US adults can be linked to pathogenic arrhythmia syndromes…
A study recently published in Cell Stem Cell has shown that using human stem cells in combination with medical chemistry can improve existing medications to treat genetic disorders. Dr. Alfred George Jr.…
by Danielle Bradshaw from In The Cloud Copy The University of Manchester’s team of researchers has come up with a new and simple means of monitoring their own electrocardiograms (ECG)…
When I was 12 years old, following my mom’s sudden cardiac arrests, I was diagnosed with a rare, genetic sudden arrhythmia death syndrome called congenital long QT syndrome type 5.…
by Lauren Taylor from In The Cloud Copy Long QT syndrome, also called LQTS for short, is a disorder of the heart’s rhythm that can possibly cause the heart to…
A recent article published in EMS WORLD cautions that long QT syndrome (LQTS), a potentially lethal disease in young people, often remains undiscovered. An ECG can detect the disease,…
Because of COVID-19, many health and medical-related conferences and events have been moved to virtual settings. But that doesn't mean that the learning has stopped, says Healio. During the Heart…
The Problem with Identifying the Genes that Cause a Genetic Disorder from In The Cloud Copy When it comes to genetic disorders, it can be very difficult to pinpoint exactly what…
Long QT syndrome (LQTS) is a congenital disorder that manifests as a prolonged QT interval on patient electrocardiograms. Those who are affected by LQTS are more likely to experience…
When I was 12 years old, following my mom’s sudden cardiac arrests, I was diagnosed with a rare, genetic sudden arrhythmia death syndrome called Congenital Long QT Syndrome Type 5.…
According to Medical Xpress, Professor and Doctor Joseph Wu is looking into the complications of DNA testing and genetic mutations. Specifically, the confusion of gene mutations that are labeled "variants…
According to a story from Neurology Advisor, a retired physician experienced the challenges of being a rare disease patient first hand after being diagnosed with primary periodic paralysis thanks to…
According to a story from CBC News Toronto, Rayvonte Ball was an avid basketball player before he mysteriously collapsed on the court last year. Last March, the young man stopped…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
