Factor VII deficiency: a plain-language guide
Factor VII deficiency is a rare bleeding condition in which the blood is missing enough of a protein called factor VII, so it does not clot the way it should [1].
This page provides general information. It does not replace advice from a doctor or another qualified healthcare professional.
Key facts
- Factor VII is a protein in the blood that helps start the process of forming a clot. When there is too little of it, or it does not work properly, bleeding can go on longer than it should [1,3].
- Estimates suggest factor VII deficiency affects about 1 in 300,000 to 1 in 500,000 people. It is the most frequently occurring of the rare bleeding disorders [1,4].
- The inherited form is caused by changes in a gene called F7 and is passed on in an autosomal recessive pattern, which means a child usually inherits a changed copy from each parent [1,2].
- Severity varies widely. Up to one third of people with factor VII deficiency never have bleeding problems, and the amount of factor VII in the blood is not a reliable guide to how much someone will bleed [1,2].
- Diagnosis usually starts with a blood test called the prothrombin time, followed by a test that measures factor VII activity [2,4].
- Recombinant activated factor VII, known as eptacog alfa, is approved in the United States and the European Union for treating bleeding and for surgery in people with this condition [5,6].
On this page
- What is factor VII deficiency?
- How common is it?
- What causes it?
- What are the symptoms?
- How is it diagnosed?
- How is it treated?
- Living with factor VII deficiency
- Thinking about a clinical trial?
- Current research
- Support and further information
- Questions people often ask
- Related trialport information
- Sources
- Review information
What is factor VII deficiency?
When a blood vessel is injured, proteins called clotting factors work in a set order to build a clot. Factor VII is one of the first to act, and it starts the chain of reactions that follows. In factor VII deficiency the body makes too little factor VII, or what it makes does not work properly, so bleeding can last longer than it should [3].
The congenital form is inherited and present from birth. An acquired form can develop later through liver disease, low vitamin K, some blood conditions, or blood-thinning medicines such as warfarin [1].
Other names include F7 deficiency, hypoproconvertinemia, proconvertin deficiency and, in older sources, Alexander’s disease [1,4]. The clotting factors in use today are numbered I to XIII, with no factor VI in the list [3]. This is not hemophilia, which involves factors VIII or IX and is inherited through the X chromosome [3].
How common is it?
Factor VII deficiency is estimated to affect about 1 in 300,000 to 1 in 500,000 people, and it is the most frequently occurring of the rare bleeding disorders [1,4]. Orphanet puts the point prevalence in Europe close to 1 in 300,000, and higher where marriage between close relatives is common [2].
Treat these as estimates. Registries count only people who have been diagnosed, and since up to a third never bleed abnormally, some are never tested [1]. Comparable figures are not available for many parts of the world, so no reliable global total can be given.
What causes it?
Genes are instructions inside our cells. The inherited form is caused by changes in a gene called F7, which carries the instructions for making factor VII. More than 250 different changes have been described [1,2].
Inheritance follows an autosomal recessive pattern. A person usually needs a changed copy from both parents, and each parent, carrying one changed copy and one working copy, typically has no symptoms [1,2]. Men and women are affected equally [4]. Where both parents carry a changed copy, each pregnancy carries a one in four chance that the child inherits both, so families are usually offered genetic counseling [2].
What are the symptoms?
Symptoms vary a great deal, and up to one third of people never have bleeding problems [1]. Common signs include nosebleeds, bleeding gums, easy bruising and prolonged bleeding after surgery, dental work or injury. Bleeding into joints and blood in the urine happen less often, and many women and girls have heavy or prolonged periods, which can lead to low iron and tiredness [1,3]. A few people form unwanted blood clots instead of bleeding, for reasons that are not understood [1]. In people with very low levels, bleeding inside the skull or in the gut is possible, and babies with severe deficiency are often diagnosed in the first six months of life after this kind of bleed [1,4].
One point sets this condition apart. The amount of factor VII in the blood is a poor guide to how much a person will bleed: some people with very low levels have no symptoms, while others with similar levels bleed severely [2]. Bleeding is unusual above about 30 percent of normal, though exceptions are common enough that each person is treated individually [2,3].
When to seek urgent help. Bleeding inside the skull or in the gut needs immediate medical attention. Signs include a severe or unusual headache, repeated vomiting, unusual drowsiness or confusion, weakness on one side of the body, or vomiting blood or passing black stools. In a baby, unusual floppiness, poor feeding or a sudden change in alertness should be checked without delay. Contact your treatment center straight away after any head injury [1,4].
How is it diagnosed?
Testing is usually arranged by a hematologist, a doctor who specializes in blood conditions, at a bleeding disorders treatment center [3]. The first clue is often a blood test called the prothrombin time, which measures how long a sample takes to clot. In factor VII deficiency it is prolonged while a second clotting test is normal, a pattern that points toward factor VII [2,4]. A factor VII activity test then measures how well the protein works, against a normal range of roughly 70 to 140 percent, and genetic testing of F7 can confirm the diagnosis [2]. Doctors also rule out acquired causes such as liver disease and blood-thinning medicines [2,4]. Diagnosis is often delayed, since many people have no symptoms and are found by chance during clotting tests before surgery.
How is it treated?
There is no cure. Treatment aims to stop bleeding, to cover surgery and dental work, and in some people to prevent serious bleeds.
The main treatment is recombinant activated factor VII, known generically as eptacog alfa, made in a laboratory rather than from donated blood [3]. In the United States it is approved for bleeding episodes and for surgery in adults and children with congenital factor VII deficiency, at 15 to 30 micrograms per kilogram of body weight every four to six hours until bleeding stops [5]. It is authorized for the same condition across the European Union [6]. Serious blood clots have been reported after treatment, so it is given under specialist supervision [5].
A plasma-derived factor VII concentrate is available in some countries, and prothrombin complex concentrate or fresh frozen plasma may be used where it is not [2,3]. Antifibrinolytic medicines such as tranexamic acid, and hormonal treatments, help control heavy periods and bleeding after dental work [3].
A few people with severe deficiency, particularly after bleeding in the brain or gut, receive regular preventive treatment. Registry data support injections three times a week totaling around 90 micrograms per kilogram weekly [7]. Availability differs between countries, so what is offered locally may not match what is approved elsewhere.
Living with factor VII deficiency
Care works best through a bleeding disorders treatment center, which coordinates testing, treatment products and advice. Carrying medical identification helps in an emergency: a card or bracelet naming the condition, the treatment needed and the center’s telephone number. Everyday care includes good dental hygiene and telling any dentist in advance. Vaccinations are recommended and may be given under the skin rather than into muscle, and aspirin and anti-inflammatory painkillers such as ibuprofen should not be taken without medical advice [3].
Women and girls often carry more of the burden, through heavy periods, low iron and bleeding around childbirth, so genetic counseling before pregnancy and a delivery plan agreed with the obstetrician and the bleeding disorders team are both recommended. Talking to others in the same position helps many families [3].
Thinking about a clinical trial?
Clinical trials are research studies that test whether a treatment or approach works and is safe. Factor VII deficiency is rare, so studies are few and are usually run at a small number of specialist centers. Deciding whether to look into one is a personal choice, and it helps to take it in steps.
1. Understand what the study is asking
It is worth being clear on what a study actually involves:
- what the researchers are trying to learn
- what treatment is being studied, and what it is being compared with
- how long the study lasts
- what visits, tests or procedures are involved, and how often
- whether travel to a study site is required, and how far
- the possible benefits, and the known and unknown risks
- what happens when the study ends, including whether treatment continues
2. Consider possible medical suitability
Every trial has rules about who can take part. These are called eligibility criteria. Some rules describe who can join, and others describe who cannot. For a factor VII deficiency study, the criteria might include a confirmed diagnosis, a measured factor VII activity level below a set figure, a particular age range, a recorded history of bleeding, whether a person is already on regular preventive treatment, and whether they have ever had a blood clot.
trialport’s medifit helps people consider information related to possible medical suitability. It does not diagnose a condition, confirm eligibility or replace formal screening by the study team.
Explore factor VII deficiency clinical trials through trialport
3. Consider whether participation fits your life
Medical suitability is only part of the picture. A study can be a good match on paper and still be difficult in practice. Worth thinking through:
- the time each visit takes, and how many there are
- travel and distance, which can be considerable for a rare condition
- work, school or caring commitments
- support from family and friends
- how you feel about injections, blood draws and keeping a bleeding diary
- whether you feel you understand the study well enough to decide
- for parents, how a child feels about taking part, not only how the adults feel
trialport’s readifit helps people reflect on their understanding, motivation, time, routines, support, emotions and practical arrangements.
4. Ask questions before deciding
Useful questions to put to a research team:
- Why is this study being carried out, and what is already known?
- What exactly would I or my child need to do, and for how long?
- What are the known risks, and what is still unknown?
- Could I receive a placebo? A placebo is a dummy treatment with no active medicine, used so researchers can compare results fairly.
- What happens if I have a bleed during the study, and can I still use my usual treatment?
- Can I leave the study after joining, and what happens if I do?
- Who provides my usual medical care while I am in the study, and who do I contact if I feel unwell?
- Are travel and other costs covered?
- What happens after the study ends, and could I keep receiving the treatment?
Taking part is voluntary. A person can ask questions, speak with people they trust and choose not to participate.
Search for clinical trials at app.trialport.com.
Current research
Research activity is limited by how rare the condition is. One treatment is being studied specifically in factor VII deficiency. Sutacimig, formerly called HMB-001, is an investigational injection given under the skin. It is designed to hold the body’s own activated factor VII at the surface of platelets, the small blood cells that gather at an injury, so that clotting is amplified where it is needed. Its sponsor reported in July 2026 that a phase 2 study in factor VII deficiency is under way, alongside laboratory work indicating that the antibody attaches to most of the gene changes seen in moderate and severe deficiency. It is not approved anywhere [11]. Long-running treatment registries remain important, since they are the main source of evidence on how often serious bleeds happen and how well preventive treatment works [7].
Study status checked: 3 August 2026. Research moves and what is being studied changes, so this list will date. For current information, search at app.trialport.com.
Support and further information
The World Federation of Hemophilia is the best global starting point, with a plain-language booklet on rare clotting factor deficiencies and a directory of treatment centers and national organizations [3]. In the United States, the National Bleeding Disorders Foundation has a condition page and a chapter network [4]. In the United Kingdom, The Haemophilia Society covers inherited bleeding disorders [10]. In Europe, the European Haemophilia Consortium lists national member organizations [9], and in Australia, Haemophilia Foundation Australia links to state foundations [8]. Orphanet and MedlinePlus Genetics are free and reliable for clinical detail [1,2]. Coverage is thin in much of Asia, Africa, the Middle East and South America, where the World Federation of Hemophilia directory is the next best contact [3].
Questions people often ask
Is factor VII deficiency the same as hemophilia?
No. Hemophilia A and B involve factors VIII and IX and are inherited through the X chromosome. Factor VII deficiency involves the F7 gene and affects men and women equally [3,4].
Does a low factor VII level mean severe bleeding?
Not necessarily. There is no consistent relationship between the measured level and how much a person bleeds, and some people with very low levels have no symptoms at all [2].
Can it be passed on to my children?
It can. A child usually needs a changed copy of the F7 gene from each parent. Genetic counseling can explain the chances in a particular family [1,2].
What is hypoproconvertinemia?
Another name for the same condition. Proconvertin is an older name for factor VII [1,2].
Do all people with the condition need treatment?
No. Many need treatment only around surgery, dental work or injury. Regular preventive treatment is reserved for people with severe deficiency and a history of serious bleeding, and there is no cure [3,5,7].
Related trialport information
- Search for factor VII deficiency clinical trials
- How clinical trials work
- Questions to ask a clinical trial team
- Understanding informed consent
- Preparing for a clinical trial visit
- medifit and readifit explained
- Related guide: von Willebrand disease
- More guides to blood and bleeding conditions
Sources
- MedlinePlus Genetics, National Library of Medicine. Factor VII deficiency. Last updated 1 October 2016. https://medlineplus.gov/genetics/condition/factor-vii-deficiency/ Accessed 3 August 2026.
- Orphanet. Congenital factor VII deficiency (ORPHA:327). Expert reviewer Dr Muriel Giansily-Blaizot; last update February 2019. https://www.orpha.net/en/disease/detail/327 Accessed 3 August 2026.
- World Federation of Hemophilia. What are rare clotting factor deficiencies? Montreal: WFH; 2023. https://www1.wfh.org/publication/files/pdf-1337.pdf Accessed 3 August 2026.
- National Bleeding Disorders Foundation. Factor VII. https://www.bleeding.org/bleeding-disorders-a-z/types/other-factor-deficiencies/factor-vii Accessed 3 August 2026.
- Novo Nordisk. NOVOSEVEN RT (coagulation Factor VIIa, recombinant) prescribing information. DailyMed, National Library of Medicine. Initial US approval 1999. https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=ea65c32f-8518-4383-b621-17056c0eebc0 Accessed 3 August 2026.
- European Medicines Agency. NovoSeven (eptacog alfa activated): EPAR product overview. Marketing authorization issued 23 February 1996. https://www.ema.europa.eu/en/medicines/human/EPAR/novoseven Accessed 3 August 2026.
- Mariani G, Dolce A, Napolitano M, et al. Invasive procedures and minor surgery in factor VII deficiency, and: Prophylaxis in congenital factor VII deficiency: indications, efficacy and safety. Results from the Seven Treatment Evaluation Registry (STER). Haematologica. 2013;98(4):538-544. DOI 10.3324/haematol.2012.074039. https://haematologica.org/article/view/6620 Accessed 3 August 2026.
- Haemophilia Foundation Australia. Factor VII Deficiency. Last reviewed 1 February 2024. https://www.haemophilia.org.au/bleeding-disorders/other-bleeding-disorders/factor-vii-deficiency/ Accessed 3 August 2026.
- European Haemophilia Consortium. Bleeding Disorders. https://www.ehc.eu/bleeding-disorders/ Accessed 3 August 2026.
- The Haemophilia Society (United Kingdom). https://haemophilia.org.uk Accessed 3 August 2026.
- Hemab Therapeutics. Hemab Therapeutics Presents Clinical and Preclinical Data from Sutacimig in Glanzmann Thrombasthenia and Factor VII Deficiency at the ISTH 2026 Congress. Press release, 14 July 2026. https://www.globenewswire.com/news-release/2026/07/14/3326747/0/en/Hemab-Therapeutics-Presents-Clinical-and-Preclinical-Data-from-Sutacimig-in-Glanzmann-Thrombasthenia-and-Factor-VII-Deficiency-at-the-ISTH-2026-Congress.html Accessed 3 August 2026.
Review information
Written by: trialport editorial team
Reviewed by: Keith Berelowitz, Founder and CEO, trialport
Reviewed on: 3 August 2026
Next review due: 3 August 2027
References last checked: 3 August 2026