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Rare Bleeding Disorders

05.19.2014

New treatment option for Factor XIII deficiency.

By Sarah Aldridge | 02.09.2012

More new drugs are in the pipeline now than in past decades

By Rebecca A. Clay | 12.14.2011

When certified nursing assistant Julie Seminara injured herself while moving a nursing home patient back in 2001, her problems seemed serious but straightforward: She had three herniated discs in her neck and a torn shoulder.

Emergency room sign
By Melanie Padgett Powers | 06.27.2011

An Emergency Information Form for Children with Special Health Needs is available to help parents explain their child’s bleeding disorder when they must visit the emergency room.

Medical ID for hemophilia
By Kadesha Thomas | 05.23.2011

NHF encourages everyone who has a bleeding disorder to wear some form of medical ID. Some consumers are demanding more flair than the plain metal bracelet.

Teresa D’Ambrosio (right) and her sister as children
By Sarah Aldridge | 02.10.2011

People with factor V deficiency provide a challenge to their treaters. There is no factor concentrate they can infuse at home, and they can have an array of symptoms.

Cheryl Nineff D’Ambrosio
By Cheryl Nineff D’Ambrosio | 02.09.2011

Both my stepdaughters were born with severe factor V deficiency, an orphan disease with no treatment except fresh frozen plasma after a bleed is recognized.

Child with factor VII deficiency plays with yarn
By Chris Blose | 02.08.2011

A hematologist put the pieces together and diagnosed Peltier with severe factor VII (FVII) deficiency, a rare bleeding disorder formerly known as proconvertin deficiency.

Rare bleeding disorder
By Chris Blose | 02.07.2011

When Emily Bartko, 4, of Las Vegas, was an infant, bruising came easily. All it took was the pressure from a car seatbelt.

FDA approves RiaSTAP
By Molly Polen | 02.06.2011

In January 2009, the US Food and Drug Administration (FDA) approved CSL Behring’s RiaSTAP™ for the treatment of acute bleeding episodes in people with congenital fibrinogen deficiency, a rare bleeding disorder also known as factor I deficiency.

Factor XIII Deficiency
By Kurt Ullman | 02.05.2011

The Food and Drug Administration approved Corifact, the first factor treatment for factor XIII deficiency, on February 17, 2011.

Factor XI Deficiency
By Sarah Aldridge | 02.04.2011

The next day, Beck went through a battery of tests. He was told he had von Willebrand disease. It wasn’t until the following year that his real diagnosis was revealed.

Doctor with mom and little girl at a hemophilia treatment center
By Rebecca A. Clay | 02.02.2011

HTCs are designed to attend to all of a patient’s needs, from the medical and psychological to practical matters such as schooling, insurance and jobs. Learn how they can help your family.

Hospital Emergency Room sign
By Rebecca A. Clay | 01.24.2011

Pseudotumors are rare in countries with access to hemophilia treatment, but it’s important for those at risk to know about this potentially life-threatening complication.

Whiteboard
By Sarah Aldridge | 07.26.2010

The National Hemophilia Foundation has counterparts across the country advocating for the needs of patients with blood disorders. These groups had never met until the first National Conference on Blood Disorders in Public Health.

clinical trial participants
By Chris Blose | 05.25.2010

Clinical trials—whether they’re testing a new drug or treatment, measuring the safety of an experimental therapy or fine-tuning dosages of an existing product—move science and medicine forward.