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HAPPENING HIGHLIGHTS

HFA and NHF Collaborate on Patient Safety

In response to the recent unexpected number of recalls and other product
safety issues, Hemophilia Federation of America and the National Hemophilia
Foundation have responded to the community’s needs and assembled a Safety
Summit to be held in 2020. These events have highlighted the need to articulate
communication standards that will serve the community well as it enters in to a
new and uncharted era of gene therapy and other novel treatments. The issue
of safety and properly communicating issues to the community is important to
everyone. HFA and NHF have invited all representatives of the key stakeholder
groups to join the Safety Summit.
Community leaders, patient organizations, industry partners and regulators will
be in attendance. At this invitation-only summit, the goals are to identify gaps
in knowledge and understandings of current drug safety standards, develop
educational resources to address the identified gaps, create a Patient Bill of Rights
and Responsibilities, and complete a patient/organization-authored white paper
along with any other materials identified that could benefit the community. The
organizations hope to share preliminary outcomes shortly after the Summit and
expect the white paper will become public by the spring.
If there are issues/questions the community would like to be addressed at the
summit, they are encouraged to submit them to The Patient Voice, an inbox
created by HFA and NHF at http://bit.ly/PtVoiceSafety, to hear concerns. The
organizations will work to ensure submitted issues or questions are discussed.
The primary goal of the summit is to ensure safety is put front-and-center in the
mind of every community member and that the organizations are equipped to
ensure it remains a crucial piece as we move forward.

Visit http://bit.ly/PtVoiceSafety.

Blood Vibrations Drops New Album

The latest Blood Vibrations album has been released. The album debuted at the
Blood Vibrations Listening Center as part of the Blood Work exhibition by FOLX
(Justin Levesque) during the National Hemophilia Foundation Bleeding Disorders
Conference in Anaheim. Blood Vibrations: 8 (Blood Work Mixtape) features
sounds and visions from people in the bleeding disorders community. The latest
release features an album cover by Kennet Kaare and music by various artists.

6 DATELINE FEDERATION < www.hemophiliafed.org