The Flammable Heart Exhibition


The Charles August Long Undiagnosed Diseases Act of 2011; the battle to save community health center funding and keep Medicaid intact; The Walking Gallery; and The Flammable Heart Exhibition.

Rare Disease Day 2011: Research, Action and Impact

Updates from MarbleRoad for Rare Disease Day 2011, including events, publications, and a quick shout-out for those fighting rare kidney disease.

Increased Patient Participation in the Fight Against Rare Disease – IOM Report


The Institute of Medicine (IOM) issued a new report: “Rare Diseases and Orphan Products: Accelerating Research and Development” which calls for increased participarticipation by people with rare diseases.

Patients 2.0 – Health 2.0 – Rare Disease Patients invited!

Join Health 2.0 as they work to plan the next phase of action for patients, citizens and anyone passionate about improving healthcare, working both online and face to face. Wednesday, October 6 from 3-6pm at the San Francisco Hilton in Union Square @ Patients 2.0 […]