The National Hemophilia Foundation

Programs: Health education and training - through handi, nhf's information resource center, over 2,532 requests for information were answered in 2017. These requests were received from patients, families, healthcare providers and the general public on such topics as hemophilia, von willebrand disease, healthcare coverage, hepatitis c, hiv, inhibitor formation and school issues. In collaboration with medscape education, nhf offered 6 educational programs for healthcare providers reaching over 75,000 learners through online offerings for continuing education credit. We also launched new webinars specifically for hemophilia on topics such as novel therapies, joint care, sports participation, new concepts for nursing and incorporating new methods of treatment into the integrated care model. Nhf created educational content for factor xiii deficient patients and their families to attend nhf's 2017 annual meeting, serving total of 46 attendees. Nhf launched a new program for factor x deficient patients, bringing 43 attendees together to learn more about factor x and connect with each other. Nhf also organized 3 national inhibitor education summits and a spanish inhibitor summit, for patients and families experiencing the complication of an inhibitor. These multi-day national summits provided education and peer connections for 814 participants in total. Nhf's education for empowerment and collaborating in care programs bring workshops out to local chapter and htc events. Nhf facilitated 134 workshops, with over 3550 participants in 2017. The primary goals of the national hemophilia foundation's (nhf's) victory for women and better you know programs are: 1) to increase awareness to facilitate early and accurate diagnoses; and 2) to provide affected women with education and support. 2017 highlights included: a webinar series with key leaders and guest speakers that taught chapters how to create a women's educational support program and how to evaluate success, as well as an in person training for local women's leaders; funding to chapters for educational and support activities for girls and women with bleeding disorders; funded 2 women chapter representatives with a bleeding disorder to the nhf annual meeting; provided seven educational sessions for female consumers at the nhf 2017 annual meeting; and provided workshops (new topic in 2017 included: women bleed too) for consumers at chapter education days and women's retreats. Nhf granted 5 mini grants to chapters to provide local outreach to symptomatic undiagnosed women & girls. Steps for living is a multimedia educational program designed to increase access to age and culturally appropriate information so that children, teens, adults, and families can manage the daily challenges of living with a bleeding disorder. This also includes ensuring successful life transitions and preventing secondary complications. In 2017, stepsforliving. Hemophilia. Org had 181,000 sessions. Nhf provided 2 in-person steps for living train the trainer programs for staff and healthcare providers from 36 chapters/htcs across the country. Nhf distributed over 20,000 educational print materials in 2017, including an updated booklet on safe physical activity called playing it safe. Nhf has designed the national youth leadership institute (nyli) to assist young people from the bleeding disorders community to become well-trained, recognized leaders. Nhf achieves these outcomes by providing young adults with training, support and opportunities to provide education to the bleeding disorders community. In 2017, nhf provided trainings to the 23 members of nyli on topics including public speaking, advocacy, non-profit management and fundraising. Nine nyli members assumed leadership positions in a variety of nhf programs, including serving as a non-voting member of the nhf board; nhf annual meeting planning committee; cdc content advisory groups for joint health and women with bleeding disorders; 1st-year nyli leadership training; washington days and nhf annual meeting nyli training committee; annual meeting teen track; hemaware magazine editorial group; and social media representative. Nyli members provided educational sessions, advocated on behalf of their home states in washington dc, led peer education programs for teens, and facilitated rap sessions at national meetings.

community services - nhf's public policy department works to establish and advocate for policies that promote the health, safety, rights and access to care for people with bleeding disorders by educating federal and state lawmakers, other government agencies and officials , industry and allied organizations. Two key areas of focus are payer and consumer education, and self-advocacy. The public policy department provides training, tools and hands-on support to consumers to help them become effective self-advocates. Consumers are encouraged to participate in nhf's annual washington days program, which is a grassroots event that brings patients and their families to the hill to meet with their members of congress. In addition, nhf provides a series of educational opportunities for payers to help them better understand the unique healthcare needs of those affected by bleeding disorders.

chapter services - nhf's chapter services department provides community support by helping its 52 member chapters offer education, resources and referrals to affected members of the bleeding disorders community in the areas that each chapter serves. Chapter services offers the chapters financial support in the form of grants, sponsors training meetings and provides some hotel expense support for advocacy meetings. Department staff members mentor chapter leaders on how to create, execute and evaluate educational programs designed for their affected constituents. In 2017 chapter services held two regional leadership seminars offering training that focused on how to diversify funding through sessions such as "components of a strong development plan", "how to create a strong volunteer program", "cultivating and stewardship", and more. Regional leadership seminars also targeted advocacy and educational initiatives. A full "chapter training track" was also offered during nhf's 2017 annual meeting in chicago, illinois.

research - nhf awarded two (2) nhf/shire clinical fellowships to fellows both from emory university children's healthcare of atlanta, one to dr. Patricia zerra and the other to dr. Karen zimowski. A total of three (3) nhf judith graham pool postdoctoral research fellowships were awarded to the following institutions respectively: university of california, san diego for the project, "identification, characterization and therapeutic targeting of key molecular markers and pathways implicated in the development of hemophilic arthropathy; boston children's hospital for the project, "development of hematopoietic crispr/cas9 gene activation for hemophilia therapy; and the scripps research institute for the project, "dissecting the roles of non-muscle myosin iia in may-hegglin platelet disorders. "nhf provided one career development award to the university of colorado denver recipient for the innovative project "vwf regulation in blood outgrowth endothelial cells from individuals with altered vwf levels" that promotes the development of therapies to advance the field of bleeding disorders research. The nhf nursing excellence fellowship was awarded to a nurse at northern regional bleeding disorders center in traverse city, michigan for his project, "point-of-care ultrasound in hemophilia: a study-intervention. " the nhf social work excellence fellowship was awarded to a social worker at children's hospital of michigan for her project, "empowering the future of hemophilia through swimming. "