Alliance Update, October 2022

Alliance Update
  • Meet Jennifer Anders!
  • Jennifer AndersJennifer is excited to start her career in the non-profit sector and contribute to the Hemophilia community in new and exciting ways as the first full time team member supporting analytical, reporting, and data needs for the Alliance team and members. Jennifer will be digging into the data from Manufacturers, Members, and beyond. Her responsibilities will include producing reports for internal/external stakeholders, refining analytical and data requirements gathering, and assisting in automating current activities. Her hope will be to bring data to the fingertips of both the Alliance and Members for improved informed decision-making processes that will not only propel the organization forward but support members for years to come.

    She is excited to start working with the data and to learn more about the ways we can make the data work for all of us in strengthening our mission. Prior to joining the Alliance, Jennifer supported data needs for academic organizations, state agencies, and financial institutions. In her spare time, she enjoys sailing, spending time with her dogs, and hiking.

  • Finding Talent Within the Bleeding Disorders Community!
  • We have created a job posting board for positions within our member HTCs, a new feature on our website as an added benefit for our members. We have made the process simple – posting positions on the site is easy! Please send us an email and include the following information:

  1. Position Title
  2. Employment Type (Full Time, Part Time, Temporary, Remote, Internship, Consulting, etc.)
  3. Your HTC website link or URL
  4. The date you’d like the posting to be visible on our website
  5. The date you’d like the posting to be taken offline
  6. Full Job Description (click here for example for an Alliance job posting for a Director of Community Relations)
  7. Email address to receive submissions from candidates
  8. Submit your job posting to

Please let us know if you have any questions.

  • Update re: Re-Accreditation of Gene Therapy Modules Developed by Partners
  • The Hemophilia Alliance is pleased to announce our support for the re-accreditation of the 3 Gene Therapy modules developed by Partners in Bleeding Disorders Education in collaboration with NHF and ATHN.

    The modules are currently on the learning site with continuing education credit. Knowing that continuing education credit is important for maintaining many of the Alliance members’ medical licenses, and in support of the larger mission of Partners to support ongoing learning and training within our HTC community, the Alliance is providing financial support to cover the cost of re-accrediting the following modules:

  • Gene Therapy for Providers 101 course – This learning activity provides basic education on hemophilia gene therapy, including the aims of gene therapy; the packaging, delivery, and activity of the replacement genes; and the means by which the replacement genes lead to production and/or availability of normal clotting factor in persons with hemophilia. The module also reviews important information for discussing hemophilia gene therapy with patients, such as knowledgeable informed consent, outcomes data, and potential risks and benefits.
    • Authored by Steven Pipe, MD & Shelley Crary, MD, MSCS
    • Credit provided: ACCME (0.75); ANCC (0.75); ACPE (0.75)
  • Gene Therapy for Providers 201 & 301 courses – These learning activities are process-oriented intermediate courses that will guide HTC staff through the steps an institution must take to prepare to administer hemophilia gene therapy upon commercial availability of these products. Topics include: Patient eligibility, selection, and decision making; guidance on gene therapy administration; preparing patients, HTCs, and hospital system for administration of gene therapy; and short and long-term monitoring and management after gene therapy administration.
  • Gene Therapy for Providers 201
  • Authored by Courtney Dawn Thornburg, MD, MS; Ulrike Margret Reiss, MD; & Rebecca Kruse-Jarres, MD, MPH
  • Credit provided: ACCME (1), ANCC (1.0), ACPE (1.0)
  • Gene Therapy for Provider 301
  • Authored by Doris V. Quon, MD & Lindsey A. George, MD
  • Credit provided: ACCME (1), ANCC (1.0), ACPE (1.0)
  • HOW TO VIEW: Visit Sign into your account and enroll in the modules. In order to qualify for credit, you must complete all steps in the “To Do” section of the module including reviewing the disclosure, viewing the presentation, and completing the evaluation survey and post. The modules are available until October 13, 2023.

Also in this Issue…

Notes from Joe
· 340B Blues

Legal Update
· How to Compliantly Increase Visibility of HTCs and the Comprehensive Care Model

Washington Update
· Webinar on Implementation of the Hemophilia Skilled Nursing Facility Access Act Available

Payer Update
· Payer Trends: What You Need to Know

Notes from the Community
· Illinois Ultra-Rare Bleeding Disorders Event a Success

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