The Rare Disease Journey

THE RARE DISEASE JOURNEY RARE DISEASES AFFECT OVER 300 MILLION PEOPLE WORLDWIDE THEIR JOURNEY BEGINS WITH GETTING AN ACCURATE DIAGNOSIS, WHICH CAN BE A LONG AND DIFFICULT PROCESS ONCE DIAGNOSED, MANY STRUGGLE WITH POORLY UNDERSTOOD ILLNESSES LESS THAN 5% OF RARE DISEASES HAVE A CURE HOWEVER, THERE IS INCREASING HOPE FOR THOSE WITH RARE DISEASES THE ORPHAN DRUG ACT OF 1983 BROUGHT MORE THAN 2,700 POTENTIAL TREATMENTS TO THE RESEARCH PIPELINE 400 OF THESE ORPHAN MEDICINES ARE NOW FDA APPROVED 450 NEW MEDICINES TO COMBAT RARE DISEASES ARE IN DEVELOPMENT TODAY PATIENTS, ADVOCATES, INDUSTRY, POLICYMAKERS, AND OTHER STAKEHOLDERS: LET'S JOIN TOGETHER FOR BETTER CARE ON RARE DISEASE DAY 2014! VISIT RAREDISEASEDAY.ORG AND TWEET #RAREDISEASE TO GET INVOLVED Sources http://globalgenes.org/who-we-are-2/ http://www.nytimes.com/interactive/2011/01/20/health/healthguide/te_rare_diseases.html?ref=health&_r=0 http://www.rarediseaseday.org/article/what-is-a-rare-disease http://www.phrma.org/sites/default/files/pdf/Rare_Diseases_2013.pdf http://www.rarediseases.org/news-events/news/30-years-oda http://www.phrma.org/sites/default/files/pdf/Rare_Diseases_2013.pdf http://www.rarediseaseday.org/article/get-involved MassBio CMM The Campaign for Moden Medicines LillyPad Lte, MASSACHUSETTSmoTCNOLOGv COUNCIL