A total of 5 posts are filed under SCAD
Spontaneous Coronary Artery Dissection – I HAD A SCAD?
For years, I searched for information on Post-Partum Coronary Artery Dissection. Twenty years ago, on January 4th, 1994, I suffered from a… Continue Reading
How Biopharmaceutical Companies Should Engage With Rare Disease Patient Advocates
For orphan drugs, the marketing strategy should include increasing awareness and education about the disease. This is a key mission for many… Continue Reading
The Importance of Patient Initiated Research and Virtual BioTechs
Sharonne N. Hayes, MD, from the Mayo Clinic, recently authored a blog, “The potential of patient initiated research in studying rare… Continue Reading
The Power of Rare Disease Patients – From Passing Laws To Starting BioTechs
Thanks to the Pew Internet Foundation, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families)… Continue Reading
Wall Street Journal Reports – When Patients Using Social Networks To Spur Research
Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On When Katherine Leon began feeling crushing chest pain six… Continue Reading