Social Media a Godsend For Those With Rare Diseases
Thanks to efforts by McGarry and the online network of SCAD survivors, doctors at the Mayo Clinic in Rochester, Minn., have launched the first large-scale research project to learn more about the disease. The study is breaking new ground by using social media to recruit SCAD patients from around the world, doctors say. The plan is to input each person's medical history into a database in the hope of identifying patterns. The Mayo Clinic also will create a biobank of blood samples from patients with SCAD, along with samples from their parents and children. The hope is that the effort may lead to answers about the role genetics plays in the disease, said Dr. Sharonne Hayes, director of the Mayo Clinic Women's Heart Clinic.