Spontaneous Coronary Artery Dissection – I HAD A SCAD?

1469958_10202441394654764_858768955_n

For years, I searched for information on Post-Partum Coronary Artery Dissection. Twenty years ago, on January 4th, 1994, I suffered from a heart attack caused by Post-Partum Coronary Artery Dissection. It was unreal to me. I could not comprehend that I was only 33 years […]

How Biopharmaceutical Companies Should Engage With Rare Disease Patient Advocates

Wendy White, Founder & President of Siren Interactive

For orphan drugs, the marketing strategy should include increasing awareness and education about the disease. This is a key mission for many rare disease advocacy groups. So in the orphan drug space, the best marketing has advocacy as a part of it. Siren invited a […]

The Importance of Patient Initiated Research and Virtual BioTechs

Eileen O'Brien, Siren Interactive's Director of Search & Innovation.  Eileen has more than 16 years of digital healthcare marketing experience and is considered an opinion leader on social media

Sharonne N. Hayes, MD, from the Mayo Clinic, recently authored a blog, “The potential of patient initiated research in studying rare diseases,” where she described her experience with the rare disease SCAD–spontaneous coronary artery dissection. Katherine Leon had connected with other SCAD patients via the WomenHeart Inspire […]

The Power of Rare Disease Patients – From Passing Laws To Starting BioTechs

Greyson's_Law_Krabbe_Disease

Thanks to the Pew Internet Foundation, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families) are helping to bring about a transformation of healthcare in this country. Pew’s Susannah Fox has named them “healthcare superheroes.” Through our experience […]

Wall Street Journal Reports – When Patients Using Social Networks To Spur Research

Social_Network_Research_Disease

Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On When Katherine Leon began feeling crushing chest pain six weeks after the birth of her second child, doctors were perplexed about what was causing her symptoms. Ms. Leon was then 38 years […]