PA Chapters Go to Harrisburg
A United Effort for Bleeding Disorders’ Awareness Day
May 13, 2008
 On Tuesday, May 13, 2008 our friends from the Western PA Chapter/NHF will join members of the Delaware Valley Chapter in the state Capitol, as we visit with members of the Pennsylvania House of Representatives and Senate. The focus of our day is clear: we are asking for support for The Hemophilia Standards of Care Act, HB 1105 sponsored by Representative Lawrence Curry and SB 1030 sponsored by Senator Sean Logan. As families affected by hemophilia and von Willebrand Disease, we know that we must maintain access to:
1. all FDA-approved factor replacement therapies, no preferred medicines
2. the seven state-recognized hemophilia programs in Pennsylvania
3. the coagulation laboratories connected with our PA hemophilia programs
4. options in pharmacy and home supportive services
Plan to be a part of this very important day. Chapter buses will be available from Pittsburgh (on the west) and Plymouth Meeting Mall (on the east) to Harrisburg or you can drive. Either way, we need your help!! This is your chance to talk about how bleeding disorders have affected your life and your family. Our personal stories are very powerful. We need every member of the Pennsylvania legislature to understand why the provisions in The Hemophilia Standards of Care Act are important to us. And to do that, we need YOU!!!!! Call the Chapter office right away to register (215-885-6500)!! Be a part of history in the making!! |
