Notes from the Community, September 2020

Notes from the Community

CDC Awards Cooperative Agreements to Bleeding Disorders Organizations

The Centers for Disease Control and Prevention (CDC) has recently awarded several organizations with funds for new or continuing five-year cooperative agreements with the agency to do projects to benefit the bleeding disorders community. ATHN received funding for Public Health Surveillance for the Prevention of Complications of Bleeding Disorders, otherwise known as Community Counts. As they note in their announcement, ATHN will continue to fund participating HTCs through contracts with regional core centers which will be released in the next month. NHF notes that it received funding for educational programs for patients and healthcare providers in three key areas: inhibitor awareness, treatment for men with hemophilia, and women with bleeding disorders. HFA received funding for educational programs for patients and healthcare providers in two key areas: treatment for men with hemophilia, and women with bleeding disorders. The CDC has been a critical partner of the bleeding disorders community for many years, and we are pleased that it will continue its work on behalf of the community with partners for the next 5 years.

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Hemophilia Alliance Foundation Poster at NHF’s BDC Shows Impact of Grants

During the recent NHF Bleeding Disorders Conference, the Hemophilia Alliance Foundation presented a poster, Longitudinal trends of patient-focused programs in the bleeding disorders community from 2013-20: a retrospective analysis of Hemophilia Alliance Foundation grants. The poster details gaps in funding for national and local bleeding disorders organizations and the unique role that the Hemophilia Alliance Foundation plays in increasing capacity at bleeding disorders non-profits and helping address gaps in community programming and clinical care. The poster shows the impact of the Foundation’s grants, which are only possible due to the support of the Alliance and our HTC members.

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NHF Seeking Comment on Blue Sky Strategic Plan

NHF is working with the bleeding disorders community to envision our future for the next decade, and we need your input. Earlier this summer, we conducted teleconferences, co-moderated by NHF President and CEO Leonard Valentino, MD, with members of the bleeding disorders community, including healthcare providers, chapter leaders, patients and family members, advocacy groups, and NHF board and staff. The goal was to discover what — if money, time, and effort were no object — would the future of the bleeding disorders community look like? We summarized the findings and would like your feedback on the ideas and topics these groups generated.

NHF must be an organization that meets the needs of the entire bleeding disorders community. Please read the summary and let us know your thoughts on the future direction of NHF.

Click here to participate and give your opinion.

Also in this Issue…

Notes from Joe
· Continued Opportunities and Threats Facing HTCs

Legal Update
· 340B Program Developments: The Latest

Payer Update
· Know Your Patients and their Insurance Status

Alliance Update
· Alliance Seeking Board Nominations
· Join Our Growing Hemophilia Alliance Team
· 2021 Meeting Schedule