When navigating the online ecosystem of the bleeding disorders community, it can be confusing as to which organizations run what site. While some organizations run pages with transparent naming, like HFA’s Facebook page, sometimes it’s not so clear. We developed this tool to shine a light on those pages and resources that may not have the most transparency in their name.  If you have any questions or feel we’ve omitted a site, please let us know! Email us at info@hemophiliafed.org or call (202) 675-6984.
Industry |
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Who They Are | What They’re Called | Who Manages the Page | |
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Bleeding Disorders Community | Takeda (formerly Shire) | |
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ALPROLIX® [Coagulation Factor IX (Recombinant), Fc Fusion Protein] |
Sanofi Genzyme | |
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Hemophilia CoRes | Sanofi Genzyme | |
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ELOCTATE [Antihemophilic Factor (Recombinant), Fc Fusion Protein] |
Sanofi Genzyme | |
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Genentech | Genentech | |
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Genentech | ||
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Changing Hemophilia | Novo Nordisk | |
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Our Hemophilia Community | Pfizer | |
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MicroHealth | MicroHealth LLC | |
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Supporting Bleeding Disorders | Octapharma | |
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Bleeding Disorders Resources Network | Specialty Infusion Company | |
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Hemophilia Market Research | Trace Resource Group, a market research vendor | |
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Tribeca Communications Hemophilia Market Research | Tribeca Communications | |
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Hemophilia TalkShop | We were unable to verify the ownership of this page | |
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Your Hemophilia Resource | We were unable to verify the ownership of this page |
If you feel we’ve omitted a site, please let us know! Email us at info@hemophiliafed.org or call (202) 675-6984.
Last updated September 2020.
Other |
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Who They Are | What They’re Called | Who Manages the Page | |
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Hemos Unite | Matti Vann (Hemophilia Mother) | |
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Stop the Bleeding! A comedic web series. | Believe Digital | |
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webleed.org | webleed.org/sangramos.com |
If you feel we’ve omitted a site, please et us know! Email us at info@hemophiliafed.org or call (202) 675-6984.
Last updated March 2020.Â
Twitter​
Industry |
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Who They Are | What They’re Called | Who Manages the Page | |
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@TakedaPharma | Takeda | |
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@BayerPharma | Bayer | |
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@SanofiGenzyme | Sanofi Genzyme (formerly Bioverativ) | |
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@CSLBehring | CSL Behring | |
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@genentech | Genentech | |
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@novonordiskus | Novo Nordisk | |
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@pfizer_news | Pfizer Inc. | |
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@DiplomatRx | Diplomat (formerly BioRx) | |
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@MediciGlobal | Medici Global, a market research firm | |
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@MicroHealthTalk | Microhealth LLC | |
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@soleohealth | Soleo Health Homecare |
If you feel we’ve omitted a site, please let us know! Email us at info@hemophiliafed.org or call (202) 675-6984.
Last updated September 2020.Â
Other |
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Who They Are | What They’re Called | Who Manages the Page | |
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@fuchsiasupport | Comprehensive Bleeding Disorders Center | |
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@HemosUnite | Matti Vann, a hemophilia mother | |
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@MarkTKenny | Mark Kenny, a hemophilia father | |
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@TheMightySite | The Mighty | |
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@HemophiliaTeam | We were unable to verify the ownership of this account, however My Hemophilia Team offers this information. |
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@WeBleedOnline | webleed.org/ sangramos.com | |
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@WomenBleed | Women’s Bleeding Disorder Coalition |
If you feel we’ve omitted a site, please let us know! Email us at info@hemophiliafed.org or call (202) 675-6984.
Last updated March 2020.Â
 Mobile Apps
Industry |
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Who They Are | What They’re Called | Who Manages the Page | |
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Beat Bleeds | Takeda (formerly Shire) | |
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FactorTrack | Bayer HealthCare Pharmaceuticals Inc. | |
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HemoTrax | CSL Behring LLC | |
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Medtep Hemophilia | Grifols | |
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Coags Uncomplicated | Novo Nordisk | |
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HemaGo | Novo Nordisk | |
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HemMobile | Pfizer | |
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MyFactor | BioRX | |
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MicroHealth Hemophilia | Microhealth LLC |
If you feel we’ve omitted a mobile app, please let us know! Email us at info@hemophiliafed.org or call (202) 675-6984.
Last updated March 2020.Â
Other |
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Who They Are | What They’re Called | Who Manages the Page | |
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HemoTool | Dakota Rosenfelt, a hemophilia patient |
If you feel we’ve omitted a mobile app, please let us know! Email us at info@hemophiliafed.org or call (202) 675-6984.
Last updated March 2020.Â
Websites
Industry |
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Who They Are | What They’re Called | Who Manages the Page | |
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Genentech in Hemophilia | Genentech | |
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HemeWork | Genentech | |
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HEMLIBRA® (emicizumab-kxwh) | Genentech | |
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CHALLENGE ACCEPTED Show | Genentech |