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Who’s Who Online

Transparency Toolkit 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 fbeel we’ve made an error, please contact us by email at info@hemophiliafed.org, or by phone at 1-800-230-9797.

Facebook

Industry

Who They Are What They’re Called Who Manages the Page
Bleeding Disorders Community Shire
Aprolix Facebook ALPROLIX® [Coagulation Factor IX
(Recombinant), Fc Fusion Protein]
Biogen
Bioverativ CoRes Bioverativ
Elocate Facebook ELOCTATE [Antihemophilic Factor
(Recombinant), Fc Fusion Protein]
Biogen
Hemophilia And U Hemophilia & U CSL Behring
von Willebrand and U Von Willebrand & U CSL Behring
ChangingHemophilia Changing Hemophilia Novo Nordisk
Our Hemophilia Community Our Hemophilia Community Pfizer
Hemophilia Infants, Toddlers and Preschoolers Hemophilia Infants, Toddlers and
Preschoolers
MediciGlobal
[Market research firm]
von Willebrand Study Von Willebrand Study MediciGlobal[Market research firm]
MicroHealth MicroHealth MicroHealth, LLC
Octapharma FB Logo Octapharma Octapharma AG
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 that we’ve omitted a site, please reach out to us and let us know! Email us at info@hemophiliafed.org, or call us at 1-800-230-9797. This chart has been updated as of March, 2016.

 

Other

Who They Are What They’re Called Who Manages the Page
Hemos Unite Hemos Unite Matti Vann[Hemophilia Mother]
RID RID (Reduce Inhibitor
Development)
Debbie Porter[Hemophilia Mother]
Stop the Bleeding Stop the Bleeding! A comedic web series. Believe Digi
We Bleed Dot Org webleed.org webleed.org / sangramos.com
Women's Bleeding Disorder Coalition The Women’s Bleeding Disorder
Coalition
The Women’s Bleeding Disorder Coalition

If you feel that we’ve omitted a site, please reach out to us and let us know! Email us at info@hemophiliafed.org, or call us at 1-800-230-9797. This chart has been updated as of March, 2016.

Twitter

Industry

Who They Are What They’re Called Who Manages the Page
@ShirePLC Shire
Bayer @BayerPharma Bayer
c-zRYiFT @Bioverativ Bioverativ
CSLBehring_Twitter @CSLBehring CSL Behring
Hematology Times @HematologyTimes Hematology Times (An Independent Hematology News Site)
 Novo Nordisk @novonordiskus Novo Nordisk
Pfizer @pfizer_news Pfizer, Inc.
BioRX @BioRx BioRx
My hemophilia team @HemophiliaTeam [We were unable to verify the ownership of this
account]
Medici Global @MediciGlobal Medici Global[Market Research Firm]
MicroHealth_edited @MicroHealthTalk Microhealth, LLC
 NCHS @NCHSwecare National Cornerstone Healthcare Services
Soleo @soleohealth Soleo Health Homecare

If you feel that we’ve omitted a site, please reach out to us and let us know! Email us at info@hemophiliafed.org, or call us at 1-800-230-9797. This chart has been updated as of March, 2016.

 

Other

Who They Are What They’re Called Who Manages the Page
CBDC @CompBleed Comprehensive Bleeding Disorders Center
Fuchsia @fuchsiasupport Comprehensive Bleeding Disorders Center
HemosUnite @HemosUnite Matti Vann[Hemophilia Mother]
Mark Kenny @MarkTKenny Mark Kenny[Hemophilia Father]
The Mighty @TheMightySite The Mighty
RID @nomoreinhibitor Reduce Inhibitor Development
[Debbie Porter—Hemophilia Mother]
We Bleed @WeBleedOnline webleed.org/ sangramos.com
WBDC @WomenBleed Women’s Bleeding Disorder Coalition

If you feel that we’ve omitted a site, please reach out to us and let us know! Email us at info@hemophiliafed.org, or call us at 1-800-230-9797. This chart has been updated as of March, 2016.

 Apps

Industry

Who They Are What They’re Called Who Manages the Page
Beat Bleeds Beat Bleeds Baxter Healthcare
FactorTrack FactorTrack Bayer HealthCare Pharmaceuticals, inc.
HemoTrax HemoTrax CSL Behring, LLC
Medtep Medtep Hemophilia Grifols
Micro8 Micro8

MicroHealth, LLC

[Companion App for Biogen Idec’s Eloctate product]

Coags Uncomplicated Coags Uncomplicated Novo Nordisk
HemaGo HemaGo Novo Nordisk
HemMobile HemMobile Pfizer
MyFactor MyFactor BioRX
MicroHealth_edited MicroHealth Hemophilia Microhealth, LLC

If you feel that we’ve omitted a site, please reach out to us and let us know! Email us at info@hemophiliafed.org, or call us at 1-800-230-9797. This chart has been updated as of March, 2016.

 

Other

Who They Are What They’re Called Who Manages the Page
ATHNadvoy Mobile Bleed Log ATHNadvoy Mobile Bleed Log American Thrombosis & Hemostasis Network
RBdC- Resources for the Bleeding Disorders Community RBdC- Resources for the Bleeding Disorders Community Ann McClellan
HemoTool HemoTool Dakota Rosenfelt[Hemophilia Patient]

If you feel that we’ve omitted a site, please reach out to us and let us know! Email us at info@hemophiliafed.org, or call us at 1-800-230-9797. This chart has been updated as of March, 2017.

 

Websites

Coming soon! 

Assisting and Advocating for the Bleeding Disorders Community