Hemophilia

Common Name(s)

Hemophilia

Hemophilia is a bleeding disorder that slows the blood clotting process. People with this condition experience prolonged bleeding following an injury, surgery, or having a tooth pulled. In severe cases, heavy bleeding occurs after minor trauma or in the absence of injury. Serious complications can result from bleeding into the joints, muscles, brain, or other internal organs. The major types of this condition are hemophilia A and hemophilia B. Although the two types have very similar signs and symptoms, they are caused by mutations in different genes. People with an unusual form of hemophilia B, known as hemophilia B Leyden, experience episodes of excessive bleeding in childhood, but have few bleeding problems after puberty. Another form of the disorder, acquired hemophilia, is not caused by inherited gene mutations.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Hemophilia" for support, advocacy or research.

Bleeding Disorders Alliance Illinois

The Bleeding Disorders Alliance Illinois exists to improve the quality of life for persons affected by hemophilia and other inherited bleeding disorders.

Last Updated: 25 Sep 2013

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Hemophilia Federation of America

The Hemophilia Federation of America is a national non-profit organization that assists and advocates for the bleeding disorders community.

Last Updated: 26 Nov 2012

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National Hemophilia Foundation

The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorder and to preventing the complications of these disorders through education, advocacy and research.

Last Updated: 27 Mar 2013

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The Haemophilia Society

To ensure that people affected by bleeding disorders have the freedom to make choices and seize opportunities To enable people affected by bleeding disorders to better understand and manage their condition or situation. To enable people affected by bleeding disorders to participate in decision making and service delivery. To influence policy and improve services to people with bleeding disorders.

Last Updated: 3 Apr 2013

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Hemophilia" for support, advocacy or research.

Bleeding Disorders Alliance Illinois

The Bleeding Disorders Alliance Illinois exists to improve the quality of life for persons affected by hemophilia and other inherited bleeding disorders.

http://www.bdai.org

Last Updated: 25 Sep 2013

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Hemophilia Federation of America

The Hemophilia Federation of America is a national non-profit organization that assists and advocates for the bleeding disorders community.

http://www.hemophiliafed.org

Last Updated: 26 Nov 2012

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National Hemophilia Foundation

The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorder and to preventing the complications of these disorders through education, advocacy and research.

http://www.hemophilia.org

Last Updated: 27 Mar 2013

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The Haemophilia Society

To ensure that people affected by bleeding disorders have the freedom to make choices and seize opportunities To enable people affected by bleeding disorders to better understand and manage their condition or situation. To enable people affected by bleeding disorders to participate in decision making and service delivery. To influence policy and improve services to people with bleeding disorders.

http://www.haemophilia.org.uk/

Last Updated: 3 Apr 2013

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Hemophilia" returned 689 free, full-text research articles on human participants. First 3 results:

Factor VIII brand and the incidence of factor VIII inhibitors in previously untreated UK children with severe hemophilia A, 2000-2011.
 

Author(s): Peter W Collins, Benedict P Palmer, Elizabeth A Chalmers, Daniel P Hart, Ri Liesner, Savita Rangarajan, Katherine Talks, Michael Williams, Charles R M Hay,

Journal: Blood. 2014 Nov;124(23):3389-97.

 

The effect of recombinant factor VIII (rFVIII) brand on inhibitor development was investigated in all 407 severe hemophilia A previously untreated patients born in the United Kingdom (UK) between 1 January 2000 and 31 December 2011. Eighty-eight (22%) had been in the RODIN study. ...

Last Updated: 28 Nov 2014

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Anti-factor IXa/X bispecific antibody ACE910 prevents joint bleeds in a long-term primate model of acquired hemophilia A.
 

Author(s): Atsushi Muto, Kazutaka Yoshihashi, Minako Takeda, Takehisa Kitazawa, Tetsuhiro Soeda, Tomoyuki Igawa, Zenjiro Sampei, Taichi Kuramochi, Akihisa Sakamoto, Kenta Haraya, Kenji Adachi, Yoshiki Kawabe, Keiji Nogami, Midori Shima, Kunihiro Hattori

Journal: Blood. 2014 Nov;124(20):3165-71.

 

ACE910 is a humanized anti-factor IXa/X bispecific antibody mimicking the function of factor VIII (FVIII). We previously demonstrated in nonhuman primates that a single IV dose of ACE910 exerted hemostatic activity against hemophilic bleeds artificially induced in muscles and subcutis, ...

Last Updated: 14 Nov 2014

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Recombinant long-acting glycoPEGylated factor IX in hemophilia B: a multinational randomized phase 3 trial.
 

Author(s): Peter W Collins, Guy Young, Karin Knobe, Faraizah Abdul Karim, Pantep Angchaisuksiri, Claus Banner, Türkiz Gürsel, Johnny Mahlangu, Tadashi Matsushita, Eveline P Mauser-Bunschoten, Johannes Oldenburg, Christopher E Walsh, Claude Negrier,

Journal: Blood. 2014 Dec;124(26):3880-6.

 

This multinational, randomized, single-blind trial investigated the safety and efficacy of nonacog beta pegol, a recombinant glycoPEGylated factor IX (FIX) with extended half-life, in 74 previously treated patients with hemophilia B (FIX activity ≤2 IU/dL). Patients received prophylaxis ...

Last Updated: 19 Dec 2014

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Hemophilia" returned 54 free, full-text review articles on human participants. First 3 results:

[Chinese expert consensus on the diagnosis and treatment of acquired hemophilia A].
 

Author(s):

Journal: Zhonghua Xue Ye Xue Za Zhi. 2014 Jun;35(6):575-6.

 

Last Updated: 2 Jul 2014

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Cardiovascular risk in patients with hemophilia.
 

Author(s): Pieter W Kamphuisen, Hugo ten Cate

Journal: Blood. 2014 Feb;123(9):1297-301.

 

Patients with hemophilia, who have a lifelong hypocoagulability, seem to have a lower cardiovascular mortality than the general population. Nevertheless, the prevalence of cardiovascular risk factors in patients with hemophilia is as prevalent as in the general population, and hypertension ...

Last Updated: 28 Feb 2014

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What is the role of prophylaxis in the improvement of health-related quality of life of patients with hemophilia?
 

Author(s): David Buchbinder, Margaret V Ragni

Journal: Hematology Am Soc Hematol Educ Program. 2013 ;2013():52-5.

 

A 32-year-old male with severe hemophilia presents for his annual evaluation. He has a history of multiple joint bleeds that he has always treated on-demand, that is, after they occur. You have recommended prophylaxis, that is, preventively, before they occur, to decrease his episodes ...

Last Updated: 9 Dec 2013

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Global Hemostatic Methods in Hemophilia and Von Willebrand's Disease
 

Status: Recruiting

Condition Summary: Hemophilia A; Hemophilia B; Von Willebrand's Disease

 

Last Updated: 11 Feb 2014

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Socialization of Adult Men With Congenital Hemophilia A or B
 

Status: Recruiting

Condition Summary: Hemophilia A; Hemophilia B

 

Last Updated: 13 Jan 2012

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A Phase 1 Study of an Investigational Drug, ALN-AT3SC, in Healthy Volunteers and Hemophilia A or B Patients
 

Status: Recruiting

Condition Summary: Hemophilia A; Hemophilia B

 

Last Updated: 12 Jan 2015

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