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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. 聽If you have any questions or聽feel we’ve omitted a site, please let us know! Email us at info@hemophiliafed.org or call (202) 675-6984.

Facebook

Industry

Who They Are What They’re Called Who Manages the Page
Bleeding Disorders Community Takeda (formerly Shire)
Aprolix Facebook ALPROLIX庐 [Coagulation Factor IX
(Recombinant), Fc Fusion Protein]
Sanofi Genzyme
Hemophilia CoRes Sanofi Genzyme
Elocate Facebook ELOCTATE [Antihemophilic Factor
(Recombinant), Fc Fusion Protein]
Sanofi Genzyme
Genentech Genentech
Genentech
ChangingHemophilia Changing Hemophilia Novo Nordisk
Our Hemophilia Community Our Hemophilia Community Pfizer
MicroHealth MicroHealth MicroHealth LLC
Octapharma FB Logo Supporting Bleeding Disorders Octapharma
Bleeding Disorders Resources Network Bleeding Disorders Resources Network Specialty Infusion Company
Hemophilia Market Research Hemophilia Market Research Trace Resource Group, a market research vendor
Tribeca Tribeca Communications Hemophilia Market Research Tribeca Communications
Hemophilia TalkShop Hemophilia TalkShop We were unable to verify the ownership of this page
Your Hemophilia Resource 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

Who They Are What They’re Called Who Manages the Page
Hemos Unite Hemos Unite Matti Vann (Hemophilia Mother)
Stop the Bleeding Stop the Bleeding! A comedic web series. Believe Digital
We Bleed Dot Org 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.聽

Twitter鈥

Industry

Who They Are What They’re Called Who Manages the Page
@TakedaPharma Takeda
Bayer @BayerPharma Bayer
@SanofiGenzyme Sanofi Genzyme (formerly Bioverativ)
CSLBehring_Twitter @CSLBehring CSL Behring
@genentech Genentech
Novo Nordisk @novonordiskus Novo Nordisk
Pfizer @pfizer_news Pfizer Inc.
@DiplomatRx Diplomat (formerly BioRx)
Medici Global @MediciGlobal Medici Global, a market research firm
MicroHealth_edited @MicroHealthTalk Microhealth LLC
Soleo @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聽September 2020.聽

Other

Who They Are What They’re Called Who Manages the Page
Fuchsia @fuchsiasupport Comprehensive Bleeding Disorders Center
HemosUnite @HemosUnite Matti Vann, a hemophilia mother
Mark Kenny @MarkTKenny Mark Kenny, a hemophilia father
The Mighty @TheMightySite The Mighty
My hemophilia team @HemophiliaTeam We were unable to verify the ownership of this聽account,
however My Hemophilia Team offers this information.
We Bleed @WeBleedOnline webleed.org/ sangramos.com
WBDC @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.聽

聽Mobile Apps

Industry

Who They Are What They’re Called Who Manages the Page
Beat Bleeds Takeda (formerly Shire)
FactorTrack FactorTrack Bayer HealthCare Pharmaceuticals Inc.
HemoTrax CSL Behring LLC
Medtep Medtep Hemophilia Grifols
Coags Uncomplicated Novo Nordisk
HemaGo Novo Nordisk
HemMobile HemMobile Pfizer
MyFactor BioRX
MicroHealth_edited 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.聽

Other

Who They Are What They’re Called Who Manages the Page
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.聽

Websites

Industry

Who They Are What They’re Called Who Manages the Page
Genentech in Hemophilia Genentech
HemeWork Genentech
HEMLIBRA庐 (emicizumab-kxwh) Genentech
CHALLENGE ACCEPTED Show Genentech

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