Search form

Tell YOUR Story - Participate in FDA Meeting on Bleeding Disorders!

PrintFriendly

Printer Friendly and PDF

Tell YOUR Story - Participate in FDA Meeting on Bleeding Disorders!

July 18, 2014
Tell YOUR Story - Participate in FDA Meeting on Bleeding Disorders!

Do you or a family member have a bleeding disorder?  Do you want to help shape the future of bleeding disorders treatments? All you have to do is share your personal story about what matters most to you and your family about having a bleeding disorder. 

As you may know, the US Food and Drug Administration (FDA) recently announced that it has scheduled a Patient-Focused Drug Development Initiative meeting on bleeding disorders on Monday, September 22, 2014.  Only 20 disease areas were picked as part of this important initiative, where FDA officials will hear directly from patients living with a particular condition about their daily lives and treatments.

To make the most of this opportunity, we need your help! The FDA seeks participants affected by all types of heritable bleeding disorders, including hemophilia A and B, von Willebrand disease, rare bleeding disorders (including Factor I, Factor II, Factor V, Combined FV and FVIII, Factor X, Factor XI, and Factor XIII) and platelet disorders. 

To participate, all you have to do is share your story.  Speakers will discuss questions such as: What symptoms have the most impact on your life?  What activities, such as participating in physical activities or attending work/school, are complicated by your bleeding disorder?  How well do your current treatments work for you and what are the biggest complications of your current treatment regimen?

People can attend in person or participate via webcast.  Click here for the meeting registration page.

Please stay tuned for more information about this exciting meeting.  If you have any questions, please contact Johanna Gray:  jgray@dc-crd.com or 202.484.1100.