Frequently Asked Questions

 

What Is the Red Tie Challenge?

NHF’s Red Tie Challenge aims to advance the fight against inheritable bleeding disorders by raising funds for its research, education and advocacy initiatives.

What are Inheritable Bleeding Disorders?

More than three million Americans have either hemophilia, von Willebrand disease or rare factor deficiencies, all of which prevent the blood from clotting normally; can result in extended bleeding after injury, surgery or trauma; and can be fatal if not treated effectively.

What is the National Hemophilia Foundation?

The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).

You can find more information about NHF at www.hemophilia.org


Fifty Facts About Bleeding Disorders

  1. Hemophilia, von Willebrand disease and rare factor deficiencies are all inheritable bleeding disorders that prevent the blood from clotting normally.
  2. Inheritable bleeding disorders can result in extended bleeding after injury, surgery, or trauma, and can be fatal if not treated effectively.
  3. According to the Centers for Disease Control and Prevention, there are more than three million people in the U.S. living with a bleeding disorder.
  4. Hemophilia, which results from a missing or deficient protein needed for blood clotting, affects mostly males.
  5. Although hemophilia is passed down from parents to children, about 1/3 of cases are caused by a spontaneous mutation, a change in a gene.
  6. Incidences of excessive or abnormal bleeding were first recorded hundreds of years ago—as early as the 2nd century AD
  7. Hemophilia, sometimes referred to as “the royal disease,” affected the royal families of England, Germany, Russia and Spain in the 19th and 20th centuries. 
  8. Queen Victoria of England, who ruled from 1837-1901, is believed to have been a carrier of hemophilia B, or factor IX deficiency.
  9. Of hemophilia’s two main forms—hemophilia A (factor VIII deficiency) and hemophilia B (factor IX deficiency)—hemophilia A is nearly four times more common.
  10. More than half of individuals with hemophilia A have the severe form of the disorder.
  11. For individuals with hemophilia A and B, bleeds can occur internally, into joints and muscles, or externally, from minor cuts, dental procedures or trauma.
  12. Women who are carriers of the hemophilia gene can have factor levels low enough to have mild to moderate hemophilia.
  13. In the past, people with hemophilia were treated with transfusions of factor VIII obtained from donor blood, but by the early 1980s these products were discovered to be transmitting blood-borne viruses, including hepatitis and HIV. Thanks to improved screening techniques, and a major breakthrough that enabled scientists to create synthetic blood factors in the laboratory by cloning the genes responsible for specific clotting factors, today's factor-replacement therapies are pure and much safer than ever before.
  14. Nearly 75 percent of individuals with hemophilia around the world still receive inadequate treatment or have no access to treatment at all.
  15. Von Willebrand disease (VWD) is a genetic disorder in which the blood does not clot properly.
  16. According to the CDC, von Willebrand disease (VWD) affects up to 1% of the US population, or more than three million Americans.
  17. Symptoms of von Willebrand disease (VWD) include frequent nosebleeds, easy bruising and excessive bleeding following surgery or dental work.
  18. For women, von WIllebrand disease (VWD) symptoms include menorrhagia, which are heavy menstrual periods that last longer than average, and hemorrhaging after childbirth.
  19. VWD is the most common bleeding disorder, is carried on chromosome 12 and occurs equally in men and women.
  20. Some people with von Willebrand disease need to be treated with drugs that increase the level of von Willebrand factor in the blood or with infusions of blood factor concentrates.
  21. In addition to hemophilia and von Willebrand disease, inheritable bleeding disorders include such rare factor deficiencies as I, II, V, VII, X, XI, XII and XIII.
  22. Factor I deficiency is a collective term for three rare inherited fibrinogen deficiencies. Easy bruising, nose and mouth bleeds, and soft tissue bleeds are common.
  23. Individuals with factor II (FII) deficiency may experience excessive umbilical cord bleeding, easy bruising, frequent nosebleeds and hemorrhaging after surgery or trauma.
  24. Common characteristics of factor V deficiency are bruising, bleeding under the skin, and nose, gum and mouth bleeds.
  25. Both parents must carry the gene to pass factor VII (FVII) deficiency, also known as Alexander’s disease, onto their children. It affects men and women equally.
  26. Acquired factor X (FX) deficiency, or Stuart-Prower factor, can result from a lack of vitamin K, amyloidosis (abnormal buildup of the protein amyloid in various organs) and severe liver disease.
  27. Factor XI (FXI) deficiency (“hemophilia C”), is a bleeding disorder, however, FXI levels in the blood do not necessarily correlate with bleeding symptoms.
  28. Some people with factor XII deficiency—or Hageman factor deficiency— experience poor wound healing; however, most do not display bleeding issues, even after major surgery.
  29. Umbilical cord bleeding is common in almost 80 percent of individuals with factor XIII deficiency.
  30. Up to 30 percent of individuals with factor XIII deficiency sustain a spontaneous intracranial hemorrhage or brain bleed, which is the leading cause of death among individuals with bleeding disorders.
  31. People with bleeding disorders experience external and internal bleeds.
  32. For people with bleeding disorders, external bleeds can occur in the mouth, after biting the mouth, lips or tongue.
  33. For individuals with bleeding disorders, the most frequent sites of internal bleeds are the knee, ankle, elbow and hip joints.
  34. Bleeds also can occur in large muscles, such as the iliopsoas muscle in the front of the hip, causing abdominal, hip or back pain.
  35. Many women with bleeding disorders experience menorrhagia: long, heavy menstrual bleeding, and cramps.
  36. For individuals with bleeding disorders, brain bleeds, or intracranial hemorrhage (ICH), are serious. They can occur spontaneously or after trauma.
  37. The National Hemophilia Foundation (NHF) has been a vigilant advocate and protector of the nation's blood supply and blood product safety for decades.
  38. From the late 1970s to the mid-1980s, about half of all people with hemophilia became infected with HIV after using contaminated blood products. An estimated 90% of those with severe hemophilia were infected with HIV. Many developed AIDS and thousands died.
  39. There have been no transmissions of HIV through factor VIII or IX products in the US since 1987.
  40. NHF is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research
  41. For nearly half a century, NHF has awarded grants and fellowships to support innovative research aimed at finding better treatments and cures for bleeding disorders.
  42. NHF has a 54-chapter network spanning 40 states.
  43. NHF’s Medical and Scientific Advisory Council (MASAC) comprises many of the nation’s leading experts on bleeding disorders, blood safety and infectious disease.
  44. NHF’s Medical and Scientific Advisory Council (MASAC) sets standards of care for the bleeding disorders community.
  45. In 1973, NHF launched a campaign to establish a nationwide network of hemophilia diagnostic and treatment centers. Today, there are more than 140 federally-funded treatment centers (HTCs) and programs across the country.
  46. NHF hosted the World Federation of Hemophilia’s 2016 World Congress in Orlando from July 24-28—the largest-ever gathering of global bleeding disorders experts.
  47. In 2016, NHF worked with the US Department of Health and Human Services to have Bleeding Disorders Awareness Month designated as an official national health observance.
  48. NHF created Bleeding Disorders Awareness Month to formalize and expand President Reagan’s one-time designation of March 1986 as Hemophilia Awareness Month to include all bleeding disorders.
  49. The red tie is the new symbol for the bleeding disorders community because blood ties—embodied in the color red and the tie—are what bind our community together.
  50. The Red Tie Challenge challenges individuals to: make a donation at redtiechallenge.org; get a red tie, record their best red tie look and share with #RedTieChallenge; and challenge their friends and family to join them in the fight against bleeding disorders.

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