We would like to share that Rare Disease United Foundation's Beyond the Diagnosis Art Exhibit will be the headline story on CBS News Sunday Morning with Charles Osgood airing this Sunday, August 28th at 9:00am EST. We are very excited they are bringing national attention to rare diseases and the issues surrounding rare diseases. This group now has master artists from around the world donating their time and talent to paint children with rare diseases. Their goal is to put a face to all 7,000 known rare diseases. The Rare Disease United Foundation is a non-disease speciﬁc, community-based organization, working at a state-level on legislation that has a direct impact on people living with a rare disease, providing support locally, and establishing relationships at local hospitals and medical schools. For more information about the Rare Disease United Foundation, please visit http://rarediseaseunited.org/ or email at firstname.lastname@example.org.
This blog is dedicated to all the Porphyria patients worldwide. The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org