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Registration Still Open for New York State Advocacy Training Day

Several New York state bleeding disorders organizations are teaming up to host a one-day advocacy training for patient advocates on Thursday, June 19, 2008, from 9 am to 3 pm at the Doubletree Hotel on 6301 State Route 298 in Syracuse, New York, 13057. The goal is to create a communication and action network of individuals and families with bleeding disorders who are willing to bring community issues to state government officials in Albany.

Attendees will be equipped with knowledge and materials to take home and share with their local elected officials. They will learn self-advocacy and the impact of telling their own stories in their own words. The new network will spearhead annual advocacy visits to Albany, beginning in March 2009.

Speakers include:

  • Robert Robinson, executive director of the Hemophilia Foundation of Illinois, who will be talking about his recent involvement gathering a group of advocacy organizations from eight Midwestern states.
  • Deborah Coyle, MSNed, RN, assistant professor at St. Joseph’s College of Nursing in Syracuse, who will share practical tips on successful advocacy.

Arrangements have been made with the Doubletree Hotel to provide rooms to out-of-town guests at $115/night, if registered by Wednesday, June 4, 2008. Space is limited, so please reserve your spot and hotel room by contacting Andrea Lester, Mary M. Gooley Hemophilia Center: 585.922.5700 or

Partners in the initiative are: Mary M. Gooley Hemophilia Center (Rochester); Regional Comprehensive Hemophilia & von Willebrand Treatment Center (Albany); Hemophilia Association of New York (HANY), Hemophilia Services Consortium, Coalition for Hemophilia B and the National Hemophilia Foundation—all in New York City.


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