New England Hemophilia Association Inc

Programs: Education services- efforts designed to provide information and educate persons with bleeding disorders, family members, health care providers and the public about the nature of these disorders, current treatment and management to reduce complications and improve quality of life. One of our most popular, influential and successful programs has been hemophilia family camp. Now in its 22nd year, family camp is the only one of its kind in new england. Family camp serves over 200 people each year and has a proven track record of improving the physical health and well being of children with hemophilia and their families. Camp is held at the geneva point center in moultonborough, nh and is a crucial educational opportunity for families to learn about and cope with hemophilia. While family camp is the highlight of our programming year, it is also the single largest program expense in our budget. And that budget has been severely impacted this year by a large reduction in foundation grants which have typically been used to fund camp. With over 50 families typically seeking admission to camp, and with a reduction in available funding, neha is seeking additional support to maximize our camp attendance. Our camp program has been shown to increase compliance with treatment regimens and improve medical outcomes, as well as build a strong community of support. Through its effective health education, socializing, and mentoring programs it yields vital health and psychosocial benefits for families with hemophilia. Our most popular program, each year tends to "sell-out". Neha subsidizes approximately 93% of the family camp experience with families paying a nominal registration fee. Additional funds are still needed to help neha fill the gap where funding is weak, and to permit us to offer a complete summer camp experience to all those families and children that love to attend each year. The new england hemophilia association hosts two (2) bi-annual educational symposiums each year. Our april event is called springfest and our november event is called fall-fest. These educational events are targeted to consumers with bleeding disorders. Attendees of different backgrounds and disorders come from throughout new england. The program mixes education with social interaction giving all participants an opportunity to learn from professional speakers as well as to learn informally from each other. Highly qualified speakers from around the country are used to deliver timely information, education, and training to an audience close to 200 people. Experienced consumers are then used to facilitate open discussions among families on current topics such as insurance, advocacy, and healthcare reform. Topics for the event are chosen to meet the needs of all ages including youth, adults and seniors. Each year the program is rotated around the region to encourage attendance. An exhibit hall is offered for our sponsors and partners to share information about their products and services.

support services- efforts designed to decrease the stigma and isolation of persons with bleeding disorders, provide emotional support and build peer support networks and a sense of community. Neha provides information to our community and communicates a variety of messaging through our quarterly newsletter publications. These newsletters are produced by a volunteer-staff team and are mailed to over 400 subscribers in new england, as well as delivered to eight hemophilia treatment centers for distribution to new families in the bleeding disorder community. Each issue contains current news on research, personal success stories, neha activities and events, advocacy updates, and industry ads. Our award-winning newsletter is a primary vehicle to share information and personal stories on issues facing the bleeding disorders community. The recently updated neha website (www. Newenglandhemophilia. Org) contains a huge wealth of information about neha activities and events, as well as numerous resource links. Newly added features include the ability to donate online, become a member online, or join our mailing lists. Comprehensive lists of htcs, pharmaceuticals and homecare companies are provided. Information on bleeding disorders is included with links to nhf for more details. Staff and board members are listed, and an image gallery of past events shares our successes. Significant recognition is provided to chapter supporters with logo and name listings. A what's new page directs all visitors to current content of interest to our readers, and provides a one-stop location to keep informed. Early indicators are that the new neha website has become an invaluable resource to our community and to visitors seeking information on chapter activities.

advocacy- efforts designed to give a voice to the bleeding disorders community on a variety of issues such as insurance, product safety, access to quality care, etc.