Blood and immune system diseases
The most common inherited bleeding disease, in which the blood is slow to clot. Easy bruising, long nosebleeds and heavy menstrual bleeding can occur.
Not part of the panel of Türkiye's National Newborn Screening Programme (heel-prick test). Source
Orphanet has a guideline for emergency doctors for this disease (language: French). See on Orphanet
This page is translated from the Turkish original.
This disease is followed through the “Blood and immune system diseases” group.
Von Willebrand factor is a kind of glue protein that holds a clot together. In this disease, too little of the protein is made or it does not work well. This is why the clot forms late and bleeding lasts longer. There are three main types. Type 1 is the most common and is usually mild. Type 3 is the rarest and most severe type.
Symptoms are usually mild. Sometimes the disease is noticed only after surgery or childbirth.
The doctor asks about past bleeding and whether there are bleeding problems in the family. The diagnosis is made with blood tests. The tests may need to be repeated within a few days or weeks. The tests also show the type of the disease.
Treatment depends on the type of the disease and how severe the bleeding is. In mild types, treatment is often needed only for serious bleeding or before surgery. In severe types, regular treatment may be needed to prevent bleeding. Options include medicines that slow the breakdown of a clot and factor replacement therapy. Hormone treatment may be used for heavy menstrual bleeding. Regular dental care and an iron-rich diet are helpful. It is important to consult a specialist team before surgery or dental treatment, or during pregnancy. The doctor who follows the disease decides which treatment is suitable.
Type 1 and type 2 are mostly passed on through dominant inheritance. This means an affected parent has a 1 in 2 chance of passing it to each child. Type 3 and some other cases are passed on through recessive inheritance. In this case, for a couple who are both carriers, the chance of having an affected child is 1 in 4 in each pregnancy. Once a diagnosis is made, testing is also recommended for close family members. Genetic counselling guides the family.
Source: MedlinePlus Genetics: Von Willebrand disease · NHS: Von Willebrand disease · Orphanet: Von Willebrand disease (ORPHA:903)
These facts are taken from Orphanet and MedlinePlus records (last checked: October 7, 2026). Frequency values are approximate ranges.
Non-profit patient and family organizations in Türkiye working on this disease or disease group. Links are for information; Doktorclub is not affiliated with these organizations and does not endorse them.
We could not find a patient association specific to this disease.
For all rare diseases: Nadir Hastalıklar Federasyonu
Doktorclub does not diagnose, recommend treatments or refer you to hospitals or doctors. These pages are meant to help you talk with your doctor.
GlobalResearch and clinical trials
A phase 3 study was carried out with 25 children with severe von Willebrand disease.
A clinical trial is a regulated study that tests whether a new treatment is safe and whether it works, in patients who volunteer. Most trials look for a certain age, genetic change and health condition. Taking part is voluntary.
Questions you can ask your doctor
ClinicalTrials.gov lists 14 active interventional studies for this disease. 13 are recruiting now; none has a site in Türkiye. Last checked: October 7, 2026.
Selected records (studies with a site in Türkiye first):
Middle stage: the effect is being tested in a small group · Phase 2 · investigational (experimental)RecruitingNCT07575308
Late stage: the effect is being compared in a large group · Phase 3 · investigational (experimental)RecruitingNCT07115004
Late stage: the effect is being compared in a large group · Phase 3 · investigational (experimental)RecruitingNCT05582993
Late stage: the effect is being compared in a large group · Phase 3 · investigational (experimental)RecruitingNCT06998524
Middle stage: the effect is being tested in a small group · Phase 1 / Phase 2 · investigational (experimental)RecruitingNCT06754852
See all studies on ClinicalTrials.gov · Joining clinical trials
GlobalHealth policy
The International Pediatric Nephrology Association published its recommendations for diagnosing and treating atypical HUS in children.
GlobalResearch and clinical trials
Researchers re-examined the data from a large drug study.
TürkiyeResearch and clinical trials
A face-to-face survey was conducted with 104 PNH patients at 18 centers in Türkiye.
These codes identify the disease in international classifications and databases. They can help when you talk with your doctor or look for reliable sources.
Orphanet code: ORPHA:903 · ICD-11 3B12
Codes checked against WHO ICD-11 and Orphanet on October 7, 2026.
This page provides general information and does not replace diagnosis or treatment. Talk to your doctor about symptoms, diagnosis and treatment.