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NHF Announces Spring Summit 2009

NHF’s Spring Summit will take place in Atlanta on May 15-16, 2009.  NHF will provide full funding for one chapter representative (staff or volunteer), up to three hemophilia treatment center (HTC) staff per federal region and a regional coordinator for each of the 12 regions. The funding includes transportation, food and lodging costs. Additional consumers in the metro Atlanta area will be invited to attend the Saturday program.

The agenda for the meeting is as follows:

Friday, May 15, 2009   1-7 pm
Chapter Training and Welcome Reception
Effective Implementation of Best Practice Programs

Following registration and lunch, a training session for chapter staff and volunteers will be conducted. It will include a section on program development, specifically referring to the survey recently conducted on family education programs by NHF’s Chapter Services Department.  A panel discussion by both small and large chapters will provide expertise on building a program from start to finish and best practices will be shared.  HTC staff will join the group for a Welcome Reception beginning at 6pm.  

Saturday, May 16, 2009   8am-3:30pm

This year NHF will be showcasing two major initiatives: Physical Activity and Disaster Preparedness.  All chapter, HTC and consumer representatives are invited to attend.

Physical Activity and Living a Healthy Lifestyle
The high incidence of obesity in people with bleeding disorders is both compelling and worrisome.  In some age groups, particularly older teens, the numbers in our community exceed those in the general US population. 

NHF, with the support of the Centers for Disease Control and Prevention (CDC), has initiated a partnership with the national YMCA along with six NHF pilot chapters to provide membership to underserved individuals and families with bleeding disorders.  Join us as we learn more about this initiative, the working relationship with the YMCA, the collaboration between the chapters and HTCs, and the impact it is having on participants around the country. The morning will feature the latest data and research on obesity in the bleeding disorders community. Participants will learn strategies on getting patients interested and enthusiastic about physical activity and living a healthy lifestyle.  Community-based programs on physical activity and nutrition for every life stage will also be highlighted. CDC staff will offer their expertise at this session.

Disaster Preparedness
The CDC has made disaster preparedness a priority in programming for all people with chronic health conditions. This was a result of the aftermath of hurricanes Katrina and Rita in 2005, when these populations were the most adversely affected. 

The afternoon will feature an interactive exercise to help plan and respond to emergencies and disasters. Participants will break into groups to review and rehearse scenarios and situations that might affect the bleeding disorders community.

For more information, please contact Alyssa Strauss, NHF Manager of Education: or Sonia Roger, NHF Education Coordinator:


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