www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm176526.htm AUGUST 2009 -- FDA Issues Final Rules to Help Patients Gain Access to Investigational Drugs --
"The FDA has allowed expanded access to experimental drugs and biologics since the 1970s. That access has allowed tens of thousands of patients...to receive promising therapies when no approved alternative is available.
The final rules balance access to promising new therapies against the need to protect patient safety and seek to ensure that expanded access does not discourage participation in clinical trials."
emilycspecchiofoundation.org/wordpress/mission-statement The Emily C. Specchio Foundation is a not-for-profit organization dedicated to support scholarships and fellowships for students who want to change the world for the better.
rarediseasefoundation.org/ Rare Disease Foundation was establish ed in February 2009 with the goal to change the lives of children and families affected by rare and undiagnosed diseases through social support, advocacy and treatment-focused research. They are a dedicated team of physicians, researchers and parents who know firsthand the difficulties of raising a child with a rare disease.