Notes from the Community, May 2023

Notes from the Community
  • Announcing: The 4th Annual Innovation Grant

  • The Hemophilia Alliance Foundation is excited to offer its 4th annual funding opportunity for the Innovation Grant. This funding will allow an organization to fund a larger-scope project than what they are able to do with current HAF smaller grants.

    This is a one-year grant with projects to be completed within the grant year which runs between September 1, 2023 and August 31st, 2024.

    The goal of the Innovation Grant is to encourage larger scale, unique, and innovative projects that will serve the community with resources that will improve the lives of patients with inherited bleeding and thrombotic disorders.

    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. Eligible organizations would include:

    • Local applicants such as chapters, member organizations, and HTCs
    • National organizations
    • The eight HHS-designated federally-funded regional core coordinating centers.
    • The maximum amount per grant request is $50,000. Projects should demonstrate clear and measurable outcomes.

      Priority for funding will be given to new projects aimed at expansion of capacity, collaboration (between two or more organizations), and innovation.

      Organizations interested in submitting applications should review the 2023 Grant Guidance thoroughly before finalizing their applications. To see our Grant Guidance and to apply online, visit our website at:

      The deadline for application submission is July 18th, 2023. Applications must be submitted directly on the Hemophilia Alliance Foundation website.

      For questions about the Innovation Grant process, please contact the Hemophilia Alliance Foundation Grant Committee Chairman, Ralph Gruppo, MD –

    • HTC DSCSA Update
    • by Michael Fusaro, The Alliance Pharmacy

      Hemophilia Alliance members have no shortage of hot topics to pay attention to. Inboxes are filled with newsletters from state boards, federal agencies, advocacy groups, accrediting bodies, clinical updates, and more. We must often weigh our priorities and decide how to distribute the limited bandwidth we have to stay a step ahead. For many of us, DSCSA has been added to the mix.

      Despite the looming November 27th, 2023, deadline, industry readiness surveys still show all levels of trading partners behind schedule. While manufacturers and distributors scramble to prepare, there are many who believe that the FDA will extend their November deadline or at a minimum postpone enforcement of the changes. The FDA has been silent regarding any possible extension and will likely wait until the last moment to announce any such concession.

      There is not much an HTC can do to until the industry finds its own answers. While there are solution providers available to help manage the upcoming changes, most dispenser level trading partners will want to wait until the fog clears. For those of you wondering what you should do now, here are some easy ways to prepare.

      • Designate a contact person within your organization for DSCSA communications.
      • Obtain a GLN
      • Yes, I know this is annoying. We have so many identifiers already, how could we possibly need another!? Global Location Numbers are a necessary component of the new ‘EPCIS’ format. This is the FDA endorsed method to send transaction data after November 27th, 2023. Some vendors can use alternates like DEA or HIN for now, but that will almost certainly change with the new data once we go live. Fortunately, registering for a GLN is quick and inexpensive.
      • Respond to vendor readiness surveys.
      • Manufacturers and distributors will be collecting information from their customers to ensure readiness and communicate upcoming changes.
      • Stay tuned for updates from your state board, pharmacies, and vendors.
      • Helpful Links

      • FDA – DSCSA (
      • NABP – How Pharmacies can Prep for DSCSA (
      • Pharmaceutical Dispenser Global Location Number Quick Start Guide (
      • Home – DispenserEDU DispenserEDU (

    • Not Your Ordinary Mascot!
    • With how crazy busy life is within the HTC taking care of patients, dealing with insurance companies, and stressing about all the possible changes with the 340B program, it is nice to have a good outlet to have some fun not only within your HTC group, but with the whole bleeding and clotting disorder community. One fun way the Kansas City Regional Hemophilia Treatment Center has done this is having our own special mascot: Chuckles!!

      Back in 2014, the Kansas City HTC was super busy with travel and patient care (as all of us were and still are!). During a team meeting a fun idea was brought up and it was decided that our team needed a mascot who would travel around the country with us to represent us in a fun-loving way to bring us all cheer……and Chuckles the Coag Chimp was born!

      Chuckles first trip was to the inaugural THSNA meeting in Chicago, IL, but since then he has traveled to several meetings, four different countries, and three different continents! Chuckles is a regular attendee to our national meetings such as ASH, THSNA, HTRS, and ISTH…..he has also traveled to a few Hemophilia Alliance meetings and loved participating in the Hemophilia Alliance Hill Day in 2019. Anywhere you see the Kansas City HTC team members, you are sure to find Chuckles right there with them.

      Initially Chuckles was born for the Kansas City HTC team to enjoy and log their travels, but now one can say Chuckles actually might be the most popular member of the Kansas City HTC team! Not only do several members of the hemostasis and thrombosis community always ask where Chuckles is when they see the KC team, but he also has quite a robust Twitter following as well with 167 followers. His first tweets were from that trip to Chicago and all of his travels and photos are posted close to real time. Make sure to follow Chuckles on Twitter with his handle @Coagchimp.

      Chuckles has been a great asset for the Kansas City HTC team. Though the patients might not be aware of him since he mainly interacts with the HTC staff, he certainly has helped the team morale to ensure they take care of the HTC patients as best as possible.

      If other HTCs think having a mascot like Chuckles would benefit their program, they are free to reach out to the Kansas City HTC about it if they have any questions. The time commitment and cost has been minimal (one person runs the twitter account/posts the pics and literally the twitter followings happened without any work on our end) and it surely is fun to see all the interaction Chuckles has with the bleeding and clotting disorder community!

    • VWD Connect Foundation July Conference – Patient Registration Still Available!
    • VWD Connect Foundation (VCF) will be holding the 7th Annual U.S. National Type 3/Severe Von Willebrand Disease Conference in West Palm Beach, Florida on July 21-24, 2023. The conference provides a four-day patient education curriculum for Type 3 and severe VWD patients, along with a companion of their choice. The Foundation will provide a hotel room for each group and all meals for attendees, but patients and guests must provide their own travel to and from the West Palm Beach Marriott. Limited funds are available for travel assistance for patients in financial need.

      VCF is a non-profit organization established to serve the bleeding disorder community, focusing on severe Von Willebrand Disease. They provide education and foster connection for patients and families, and support research which will benefit the Von Willebrand Disease community.

      The 2023 conference’s faculty will offer educational sessions and moderate small discussion groups. Faculty members include Christopher Walsh, MD, Mt. Sinai Hospital, New York, NY, Tung Wynn, MD, UF Health Shands Children’s Hospital HTC, Gainesville, FL; Robert Montgomery, MD, Blood Research Institute and Medical College of Wisconsin, Milwaukee, WI, Robert Sidonio, MD Aflac Cancer and Blood Disorders Center, Atlanta, GA, Angela Weyand, MD, University of Michigan HTC, Veronica Flood, MD, Medical College of Wisconsin, and Prof. James O’Donnell, St. James’ Hospital, Dublin, Ireland. The faculty also includes experienced medical providers and health educators from a diverse group of disciplines such as physical therapy, genetic counseling, HTC social workers and nurses.

      A Core Education track of medical session topics will include diagnosis, symptoms, and treatments. For those who have attended the conference before and have a basic knowledge of these subjects, a Specialized Topic track will also be offered, in which patients will receive more in-depth education on specific issues. Prophylaxis, genetics, infusion techniques, nosebleeds, anemia and joint challenges will be addressed in both tracks. Psychosocial sessions will address the issues of pain, depression, anxiety, disclosure, parenting, aging, transitioning and insurance.

      For more information about VWD Connect Foundation, the conference or other Foundation activities, please contact Jeanette Cesta, Executive Director, at or 561-373-3889.

Also in this Issue…

Notes from Joe

Alliance Board Update
· New Board Members

Washington Update
· COVID-19 Public Health Emergency Ends – Impact on Medicare & Medicaid

Alliance Update
· Alliance Member Needs Assessment – Your Participation is Needed
· Upcoming Alliance Meetings

Payer Update
· Audits – We are here to help!

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