Hemophilia

Common Name(s)

Hemophilia, Haemophilia

Hemophilia is a bleeding disorder that slows the blood clotting process. People with this disorder 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 disorder 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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Cochrane Collaboration

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

Last Updated: 12 May 2015

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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: 6 Jul 2015

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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: 6 Jul 2015

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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

View Details
Cochrane Collaboration

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

http://cfgd.cochrane.org

Last Updated: 12 May 2015

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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: 6 Jul 2015

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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: 6 Jul 2015

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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 1042 free, full-text research articles on human participants. First 3 results:

Hemophilia Therapy--Navigating Speed Bumps on the Innovation Highway.
 

Author(s): Donna M DiMichele

Journal: N. Engl. J. Med.. 2016 May;374(21):2087-9.

 

Last Updated: 26 May 2016

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A Randomized Trial of Factor VIII and Neutralizing Antibodies in Hemophilia A.
 

Author(s): Flora Peyvandi, Pier M Mannucci, Isabella Garagiola, Amal El-Beshlawy, Mohsen Elalfy, Vijay Ramanan, Peyman Eshghi, Suresh Hanagavadi, Ramabadran Varadarajan, Mehran Karimi, Mamta V Manglani, Cecil Ross, Guy Young, Tulika Seth, Shashikant Apte, Dinesh M Nayak, Elena Santagostino, Maria Elisa Mancuso, Adriana C Sandoval Gonzalez, Johnny N Mahlangu, Santiago Bonanad Boix, Monica Cerqueira, Nadia P Ewing, Christoph Male, Tarek Owaidah, Veronica Soto Arellano, Nathan L Kobrinsky, Suvankar Majumdar, Rosario Perez Garrido, Anupam Sachdeva, Mindy Simpson, Mathew Thomas, Ezio Zanon, Bulent Antmen, Kaan Kavakli, Marilyn J Manco-Johnson, Monica Martinez, Esperanza Marzouka, Maria G Mazzucconi, Daniela Neme, Angeles Palomo Bravo, Rogelio Paredes Aguilera, Alessandra Prezotti, Klaus Schmitt, Brian M Wicklund, Bulent Zulfikar, Frits R Rosendaal

Journal: N. Engl. J. Med.. 2016 May;374(21):2054-64.

 

The development of neutralizing anti-factor VIII alloantibodies (inhibitors) in patients with severe hemophilia A may depend on the concentrate used for replacement therapy.

Last Updated: 26 May 2016

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Factor VIII-Mimetic Function of Humanized Bispecific Antibody in Hemophilia A.
 

Author(s): Midori Shima, Hideji Hanabusa, Masashi Taki, Tadashi Matsushita, Tetsuji Sato, Katsuyuki Fukutake, Naoki Fukazawa, Koichiro Yoneyama, Hiroki Yoshida, Keiji Nogami

Journal: N. Engl. J. Med.. 2016 May;374(21):2044-53.

 

In patients with severe hemophilia A, standard treatment is regular prophylactic and episodic intravenous infusions of factor VIII. However, these treatments are burdensome, especially for children, and may lead to the formation of anti-factor VIII alloantibodies (factor VIII inhibitors). ...

Last Updated: 26 May 2016

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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 90 free, full-text review articles on human participants. First 3 results:

Unmet needs in the transition to adulthood: 18- to 30-year-old people with hemophilia.
 

Author(s): Doris Quon, Mark Reding, Chris Guelcher, Skye Peltier, Michelle Witkop, Susan Cutter, Cathy Buranahirun, Don Molter, Mary Jane Frey, Angela Forsyth, Duc Bobby Tran, Randall Curtis, Grant Hiura, Justin Levesque, Debbie de la Riva, Matthew Compton, Neeraj N Iyer, Natalia Holot, David L Cooper

Journal: Am. J. Hematol.. 2015 Dec;90 Suppl 2():S17-22.

 

Young adults with hemophilia face unique challenges during the transition to adulthood, including issues associated with switching from pediatric to adult hematology care, building mature interpersonal relationships, and establishing an independent career with an assurance of medical ...

Last Updated: 1 Dec 2015

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Heavy hematuria requiring cystectomy in a patient with hemophilia A: a case report and literature review.
 

Author(s): Satoshi Washino, Masaru Hirai, Yutaka Kobayashi, Kimitoshi Saito, Tomoaki Miyagawa

Journal:

 

Hemophilia A is an X-linked recessive disorder caused by a deficiency in factor VIII. Hemophilia A affects 1 in 5,000-10,000 males. Hematuria is frequent in hemophilia. Hematuria in hemophilia is generally considered benign and manageable with conservative therapy; however, severe ...

Last Updated: 13 Aug 2015

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Gene therapy in an era of emerging treatment options for hemophilia B.
 

Author(s): P E Monahan

Journal: J. Thromb. Haemost.. 2015 Jun;13 Suppl 1():S151-60.

 

Factor IX deficiency (hemophilia B) is less common than factor VIII deficiency (hemophilia A), and innovations in therapy for hemophilia B have generally lagged behind those for hemophilia A. Recently, the first sustained correction of the hemophilia bleeding phenotype by clotting ...

Last Updated: 7 Jul 2015

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in Genetics Home Reference.

There are currently no related results available in GeneReviews.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Trial of AAV5-hFIX in Severe or Moderately Severe Hemophilia B
 

Status: Recruiting

Condition Summary: Hemophilia B

 

Last Updated: 27 Aug 2015

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