The long view…

Every so often it is important to take stock of where you are, where you have been and where you are going in politics. The national debate around healthcare reform has garnered a majority of the TV time and column inches in the newspaper. Events happening in DC right now are critical. Regardless of the […]

Community members take action to self-advocate and petition FDA for change

Theresa Toigo, RPh, MBA Director Office of Special Health Issues Food and Drug Administration (FDA) 5600 Fishers Lane HF-12, Room 9-49 Rockville, MD 20857   Dear Ms. Toigo,   We are people with Hemophilia and their supporters.   We recognize and appreciate the recent FDA publication of rules to clarify and expand the process […]

Mr. Wilkes goes to Washington

Nathan Wilkes, bleeding disorders community member,  has been invited to be a guest and sit in President Obama’s box during the Joint Session address.  Click here to read more.  To watch the Joint Session online tune into C-SPAN.The Wilkes’ story was featured on the White House website.  Their story illustrates the struggles families with expensive, rare disorders […]