Lawmaker joins noted rare disease advocates in effort WASHINGTON, D.C.– Congressman Leonard Lance (NJ 07) today announced he has reintroduced legislation that seeks to promote the development of meaningful treatments for patients with chronic and rare diseases. The bipartisan “Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network […]
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 […]
Updates from MarbleRoad for Rare Disease Day 2011, including events, publications, and a quick shout-out for those fighting rare kidney disease.
The Jewish Daily – FORWARD Opinion By Jonathan Jacoby The Jewish community has long been a leader in supporting medical research and education efforts, especially with regard to those diseases that disproportionately afflict people of Ashkenazi Jewish descent. Creating coalitions with other patient advocates in […]