The Hemophilia Alliance Foundation announced the culmination of its first grant cycle with the awarding of more than $250,000 to organizations serving people with bleeding disorders. The funding focused on strengthening the effectiveness of the recipient organizations. The goal was to fund one-time project requests and reward collaboration between two or more organizations. The Foundation approved funding for such projects as board development, technology purchases and upgrades, establishment of a regional advocacy group, educational meetings and educational materials.
“The Hemophilia Society of Colorado is proud to receive a 2009 grant from the Hemophilia Alliance. As a Chapter that has been going through some transitional pains, we are greatly appreciative of the support of our Hemophilia Treatment Centers in helping us better meet the needs of our community. We look forward not only to working collaboratively with our local HTC, but also to demonstrating to other Chapters how a functional Chapter should be modeled – one that is truly accountable to the hemophilia community and capable of focusing and delivering on its Mission Statement and long term goals. Such a level of cooperation is essential to improving life for all persons and families dealing with bleeding disorders, now and in the future.” reported Treasurer, Nathan Wilkes.
Joanne Davis, MD, wrote, “At the University of Miami, we are committed to ensuring that our patients and families have complete access to all available educational and financial assistance information. This commitment requires us to make sure that all materials are presented in clear, concise and comprehensible language – both English and Spanish. The 340B program represents a significant savings for eligible families, as well as a source of income to improve and expand HTC services. However, the concept and mechanism of implementation of this program can be confusing! We are very pleased to be able to make our Spanish language 340B materials available to Alliance members, through the support of a grant from the Alliance.”
Robert Fox, President and CEO of the Mary M Gooley Hemophilia Center, wrote “These grants enable people with bleeding disorders to participate in educational offerings, advocacy initiatives and a variety of other programs. The Alliance Foundation is one way that HTCs with factor programs support the communities they serve. In New York, the Alliance Foundation is supporting a statewide effort aimed at giving patients access to elected officials and other decision makers.”
The Foundation also provided $5,000 in funding to each of the 12 federal hemophilia regions in support of their annual meetings. These meetings provide a forum for hemophilia care providers to exchange information and share best practices.
A second grant cycle is planned for early 2010. Leaders of tax-exempt organizations that serve people with bleeding disorders who are interested in more information should contact Joe Pugliese at the Alliance offices 1758 Allentown Road #183 Lansdale, Pa 19446. email@example.com 215-439-7173, or visit our web site.
*The Alliance is a not-for-profit organization that currently comprises 74 Hemophilia Treatment Centers. The
purpose of the Alliance is to assist its members in providing outstanding care for their patients. Our mission
The Hemophilia Alliance provides member Hemophilia Treatment Center with resources and services to
sustain the Comprehensive Care Model for individuals with bleeding and clotting disorders for more
information about the Alliance and how you can help further our mission visit us at www.hemoalliance.org
or email us at firstname.lastname@example.org.