Notes from the Community, November 2022

Notes from the Community
  • Hemophilia Alliance Foundation: Announcing Project and Patient Assistance Grants!
  • Starting December 1st applications will be available on-line for the Hemophilia Alliance Foundation 2023 Project and Patient Assistance Grants. Since 2009, the Alliance Foundation has awarded over $4 million in grants to help 140+ chapters, treatment centers, and national community organizations serving persons with heritable bleeding and thrombotic disorders. The cycle of funding currently available is for the following two types of grants:

  • Project grants meant to enable eligible organizations to build on their capacity to achieve and expand their mission
  • Patient assistance grants meant to render direct patient/family financial assistance through eligible organizations to alleviate financial hardship as a result of, or which impacts on, the management of a bleeding or thrombotic disorder.

To be eligible the applicant organization must serve persons with heritable bleeding and thrombotic disorders and operate under IRS tax exemption 501(c)(3) or 170(c)(1) or other nonprofit status. The deadline for application submission is January 31, 2023, and must be submitted directly on the Hemophilia Alliance Foundation website.

For 2023, the ceiling for grant applications is as follows:

  • Local applicants (e.g., chapters/member organizations, HTCs): $8,000
  • National organizations, and the eight HHS-designated federally-funded regional core coordinating centers: $10,000

Applications for project grants should demonstrate clear, measurable outcomes and a strong commitment to the heritable bleeding and thrombotic disorders community. The patient assistance grant application has been shortened this year, but requires submission of the organization’s patient assistance policy.

Organizations interested in submitting applications should review the 2023 Grant Guidance thoroughly before finalizing their applications. See our website at for more information and apply on-line today!

If your organization–or an organization you know–is interested in applying but feels like it does not have the capacity or expertise to do so, please reach out to Brenda Riske, HAF Chair, at! We can direct you to additional resources that will help you submit a strong application.

  • United States Hemophilia Treatment Center Network Launches Website
  • by Christina Ashburner, USHTCN Administrator

    USHTCNThe United States Hemophilia Treatment Center Network (USHTCN) is excited to announce the launch of the USHTCN Website, which is now live at

    As collaborative partners in the care and treatment of individuals with bleeding and clotting disorders, we invite you to view the website and share with others throughout the bleeding and clotting disorders community.

    The mission of the USHTCN is to represent, support, and advance national initiatives with the federally-designated Hemophilia Treatment Centers (HTCs), the USHTCN Regions and related stakeholders to promote efforts to deliver integrated, comprehensive, multidisciplinary, optimal care to individuals and families affected by hemophilia and related bleeding and clotting disorders.

    The USHTCN is led by a Network Council which is comprised of leadership from each Region. Regions are uniquely responsible for ensuring that HTCs fulfill federal grant requirements, promoting equitable access to care and surveillance, designating new HTCs, and ensuring the sustainability of HTCs.

    The USHTCN works collaboratively with HTCs and external partners to harmonize policies and procedures, respond to urgent needs, promote HTC sustainability, and meet patient and family needs. The USHTCN represents all HTCs outside of specific requirements of federal grants and partner organizations, amplifying the voice of individual HTCs and creating an identifiable entity for stakeholders and others who want to seek HTC input, get HTC feedback or propose collaborative projects.

    We welcome your feedback and look forward to our continued partnerships in the future. Should you have any questions, have content you would like to include on the website, or would like to discuss the USHTCN website further, please reach out to USHTCN Administrator Christina Ashburner at

Also in this Issue…

Notes from Joe
· Remembering Patricia Dominic
· Improving Care and Improving Resources

Alliance Board Update
· Alliance Seeking Board Nominations

Alliance Update
· HTC Wall of Walkers 2022 Update
· Operations Update

Washington Update
· Update on the 2022 Midterm Elections

Payer Update
· Alternative Funding – an increasing concern

Comments are closed.