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NHF/HFA Seek Feedback on Product Safety and Communication

April 30, 2020
NHF and HFA Hold Safety Summity

The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) are seeking comments from the bleeding disorders community on the executive summary of the NHF/HFA Safety Summit convened in Washington, DC, on January 29-30th, 2020. The summit brought together stakeholders from across the bleeding disorders community, including individuals affected by bleeding disorders, clinicians, patient advocacy organizations, pharmaceutical manufacturing companies, home healthcare companies and pharmacy providers, and federal partners to discuss monitoring, educating and communicating issues around bleeding disorders product safety.

 NHF and HFA have released an executive summary of the summit, which is now available for public commentary. The issues discussed at the summit, including current drug safety standards and communication to the community, are of primary importance to the entire bleeding disorders community. We encourage all members of the bleeding disorders community, including affected individuals, organizations, healthcare providers and industry partners to comment via the Patient Voice portal. NHF and HFA will then create and distribute a final report before the end of the year. Initial findings will be shared at organizational events starting this summer.

 “The NHF/HFA Safety Summit allowed us to openly discuss a serious number of safety and product concerns that transpired throughout 2019 and start working towards solutions for improved safety monitoring, communication, and education,” said Leonard Valentino, President and CEO of NHF.  “This is an issue that affects all stakeholders in the bleeding disorders community, and we encourage all community members to give their feedback on the executive summary in the coming weeks.” 

The summit was convened in response to a number of recalls and product safety notifications that were issued in 2019. The two organizations, who are trusted resources for unbiased information about treatments and products, wanted to have a forum to discuss how to improve education around current drug safety standards and communications to the people who use those therapies.

  “I am extremely proud of the level of collaboration and open communication demonstrated by the participants at the Safety Summit.” said Sharon Meyers, CEO of HFA. “All in attendance were committed to putting the patient at the center of product safety. The next step is to hear from the wider community to ensure the dialogue continues about product safety and its paramount importance.”

 The comment period will be open until May 31st, 2020.