Update on Smithsonian Institution Project to Archive Bleeding Disorders History

Hemophilia Federation of America announced, in April of 2019, a partnership with the Smithsonian Institution to document the history of the bleeding disorders community, with a focus on the tragic experiences with contaminated blood, and we’re pleased to announce the first phase of the project is complete.  

HFA began an initiative to collect artifacts and oral histories from the bleeding disorders community with the intent of presenting the materials to the Smithsonian Institution’s National Museum of American History for archiving and the occasional use, where relevant, in Smithsonian exhibits.  

In the five years since the announcement and collection of artifacts, there have been challenges contributing to a delay in completing the project. With a global pandemic hitting the nation after the announcement and major transitions at both HFA and Smithsonian, the project took longer than expected, but HFA is proud to announce we have selected a final collection of recordings, artifacts and documents that will live in our nation’s capital to tell this community’s story.  

There’s still more to be done before this project is complete, but we want to begin this update by thanking the community for its commitment to this important work of preserving the history of bleeding disorders. None of this would have been possible without your support. 

HFA’s goal was always to preserve the history of the entire bleeding disorders community, and when we embarked on this journey, we knew that accomplishing this goal would be impossible without the passion and commitment of community members across the country pitching in to ensure that their story was told as well. Even knowing this community’s generosity and commitment to sharing its own story, we’ve been humbled by the incredible support that the Smithsonian project has received over the last five years. The community has risen to HFA’s challenge in a variety of ways—donating precious artifacts like handwritten diaries to be preserved in the Smithsonian’s collection and contributing funds to pay for logistic costs like digitizing documents. 

During this process, HFA has learned a lot about professional archiving, including the specific standards required by museums for which objects and documents fit their mission. The Smithsonian has declined to take some of the materials that HFA offered them, leaving HFA with a collection of documents and objects that community members entrusted us with to tell the community’s story.  

Additionally, the Smithsonian’s plans for sharing this history have changed—one exhibit that they initially envisioned has been indefinitely delayed, and while our collection will eventually be available to browse online, it’s unclear when these materials will be viewable in physical form at the American History Museum.  

HFA is working hard to find alternative homes for the materials declined by the Smithsonian, making these materials available to researchers and others seeking to tell the story of our community’s experiences. Curators at the Smithsonian said artifacts and documents which do not satisfy their criteria for preservation at the American History Museum would be attractive acquisitions for a more conventional archive. HFA has begun conversations with organizations where the materials might be of interest, including the Kalmanovitz Library at the University of Southern California where the Committee of Ten Thousand (COTT) donated its own historical materials last year.  

We hope the generous community members who gave us these deeply meaningful artifacts and documents are open to that story being told in another venue. Documents and artifacts preserved in such an archive would be immediately accessible to members of the public and researchers interested in learning about the history of bleeding disorders in America.

These developments mean HFA still has more work to do before we close the books on this project, and our goal in providing this update is to both share a few early thoughts about our next steps. Bringing HFA’s collaboration with Smithsonian to a close and finding a proper home for these remaining materials will be long-term projects, and we intend to keep communicating with you as work continues on both these fronts.  

Despite the delays, HFA hopes we can continue this project to share the history of bleeding disorders with a wider audience by partnering with additional stakeholders who understand the importance of preserving and documenting our community’s history. Thank you again for all the support you’ve provided to this project over the years—we look forward to continuing this shared work in 2024. 

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