In 2018, NORD (National Organization for Rare Disorders) adopted a set of operating practices to ensure that its member organizations maintain ethical standards and integrity from industry and other influences.…

In 2018, NORD (National Organization for Rare Disorders) adopted a set of operating practices to ensure that its member organizations maintain ethical standards and integrity from industry and other influences.…
On March 18, 2021, Kiniksa Pharmaceuticals received approval from the U.S. Food and Drug Administration (FDA) of ARCALYST (rilonacept) for the treatment of recurrent pericarditis and reduction in risk of…
In a telephone interview recently with Dr. Leslie Cooper, regarding the updated frequency of the Global Myocarditis Burden, he explained that while the numbers appear to have gone down it…
Tyler Debusschere’s brother, Jackson, fought and survived Giant Cell Myocarditis a little over 5 years ago. As a teenager, it was very difficult for him to deal with the restrictions…
It has been a year now that we have heard about COVID-19 and the potential risks to the heart from the virus. As the year progressed, the thoughts about the…
It was early January 2021 when I started having some cough, chest pain and difficulty breathing. It wasn’t too bad, but I knew it wasn’t normal. I had a COVID Test…
We are pleased to share that Kiniksa has officially launched the RESONANCE Patient Registry for Recurrent Pericarditis. The RESONANCE registry is a voluntary patient registry database led by physician-researchers with experience…
Dr. Leslie Cooper was the Senior Author for this recent paper published yesterday in the Journal of the American College of Cardiology (JACC). Please click here to read and the…
In 2019, Nick Marbach decided to become an Organ Donor. Little did he know that just three short months later, after dying unexpectedly, his selfless act of kindness would change…
There were years between Dominick Oliver and Sarah Klaus‘s stories, but sadly one was not able to survive the beast known as Myocarditis.Recently, both stories were highlighted on television media…