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National Alliance for Thrombosis and Thrombophilia (NATT) - A Patient Advocacy Group
October, 2005
The National Alliance for Thrombosis and Thrombophilia (NATT) has provided us with information about their organization. A summary of NATT's history, goals, activities, and priorities is below. To learn more about NATT, you may visit the organization's website at http://www.stoptheclot.org.
Mark Jablonski1, Lori Preston2 and Stephan Moll3
1President of NATT, Chicago; jablonskithrombo@yahoo.com
2Vice-President and Chair of Communications Subcommittee of NATT, Baltimore; LPreston@keelan.com
3Chairman of NATT's Medical and Scientific Advisory Board; UNC Chapel Hill; smoll@med.unc.edu
History
In August 2003 a patient advocacy group for thrombosis and thrombophilia formed, NATT (National Alliance for Thrombosis and Thrombophilia). The CDC under the leadership of Dr. Bruce Evatt had long seen the need for a national consumer advocacy group to (a) lobby in Washington for more funding for thrombosis and hemostasis centers, so that better care could be provided to patients suffering from thrombosis and thrombophilia, and (b) raise the awareness of these disorders in the public and the medical community so that more physicians would find coagulation a worthwhile subspecialty field to go into. Over a period of 2 years the CDC had explored options for such a patient advocacy group through patient focus group meetings and discussions with health care providers and existing patient interest groups. This fostered and eventually led to the formation of the independent and volunteer patient interest group NATT in August 2003. NATT was incorporated in December 2003 and received non-profit 501c3 status in December 2004.
NATT's Goals
NATT is a community-based, volunteer organization. Board members are individuals affected personally or through family members by thrombosis and/or thrombophilia. NATT's goals are to (a) promote greater awareness of thrombosis and thrombophilia in the public and health care provider community, (b) to ensure better diagnosis and treatment of patients with blood clots, and (c) to foster research on these disorders. The long-term objectives are to
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create a grassroots advocacy network
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pursue a national policy agenda
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develop and promote standards of care
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increase the availability of high quality care
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promote educational activities
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develop patient support groups throughout the country
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encourage, enable and initiate clinical and basic research
NATT's Activities Until Now
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NATT was incorporated in December 2003
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received non-profit 501c3 status in December 2004
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launched a website: http://www.nattinfo.org
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recruited a Medical and Scientific Advisory Board Members (MASAB)
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met with the CDC and developed a research project to determine the specific needs of patients who have suffered from or are at risk for thrombosis
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sent a letter to all Congressmen and Senators introducing NATT
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attended a workshop in Washington organized by ASH for NATT in May 2004
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met with NHLBI in February 2005 to discuss thrombosis/thrombophilia research needs
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identified existing educational materials for patients and materials still needed; created materials in fields where gaps had been determined
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organized 4 regional patient education seminars (Denver, Charlotte, Detroit, Chicago) and co-sponsored a seminar in Pittsburgh, PA
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Published and sent-out its first newsletter, available at http://www.nattinfo.org/newsletter%20spring%202005.pdf
NATT's 2005/2006 Priorities:
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Organize and co-sponsor additional patient education seminars
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create further thrombosis/thrombophilia educational materials
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establish a Q/A section on its website
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bring out further newsletters (next in November 2005)
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continue advocacy efforts in Washington
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start defining standards of care for thrombosis/thrombophilia and identify research priorities
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increase fundraising efforts and secure regular funding for the organization
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reach more patients and their families
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