Bleeding Disorders Awareness Month 2026: Build a reliable route from unexplained bleeding to diagnosis, treatment planning, and lifelong coordinated care

The executive signal: unexplained bleeding is a system concern

Bleeding histories often enter a health system through ordinary doors. A patient may mention frequent nosebleeds during a primary care visit, prolonged bleeding after a dental procedure, easy bruising in an urgent care encounter, heavy menstrual bleeding in gynecology, or excessive bleeding after surgery or childbirth. Each event can appear isolated when records, language, and accountability are fragmented.

That fragmentation matters because inherited bleeding disorders may be difficult to recognize. Some people have severe, early symptoms. Others have intermittent or life-stage-specific bleeding. Routine screening tests may not explain every disorder, and an apparently unremarkable result does not erase a concerning clinical history. Executives should not prescribe a diagnostic sequence. They should ensure that clinical leaders have agreed on when a concerning history warrants additional evaluation, consultation, or referral.

Recent research illustrates the persistence of the problem. A U.S. claims analysis of 3,756 people with von Willebrand disease found that bleeding-related claims could continue after diagnosis and that specialist contact was limited for many patients.[15] The data came from 2006 through 2015 and cannot describe current performance, but the pattern remains an important warning: assigning a diagnosis code is not the same as creating a functioning care relationship.

Global evidence shows another dimension. Registration rates for von Willebrand disease varied substantially across regions in World Federation of Hemophilia survey data, and all reported rates remained below expected levels.[12] Those registration data are not prevalence estimates. They do show how detection, documentation, and treatment-center capacity shape what a health system can see. A 2024 review estimated that large shares of people with inherited bleeding disorders remain undiagnosed in lower-resource settings.[10] Leaders should use those global findings as context, not as local benchmarks.

The practical signal for a board or executive team is straightforward. If the organization cannot describe how a concerning bleeding history moves across departments, the organization has an invisible-risk problem. The first improvement question is not “How many rare diagnoses do we have?” It is “Can a patient move from recognition to accountable follow-up without having to rebuild the story at every door?”

Recognition starts with a history that the system is prepared to hear

The visible symptom is only one part of a bleeding history. Timing, frequency, severity, family history, menstrual experience, pregnancy and delivery history, dental and surgical bleeding, medication exposure, prior anemia, and treatment response can all affect clinical interpretation. A reliable system makes room for this history and gives clinicians a clear route when concern remains.

Women and girls deserve particular attention because sex-related bleeding may be normalized, minimized, or routed only through gynecologic explanations. A 2026 narrative review of rare inherited autosomal bleeding disorders described heavy menstrual bleeding as a frequent symptom and a common reason for referral. The review connected delayed recognition with iron-deficiency anemia, diminished quality of life, and challenges during pregnancy and delivery.[1] Because it is a narrative synthesis of heterogeneous disorders, it supports awareness and coordinated planning, not a single universal protocol.

Qualitative research makes the operational failure more tangible. In interviews and focus groups with 28 Dutch women ages 18 to 40, participants described gaps in healthcare professional knowledge, downplaying of symptoms, and unmet information needs involving work, education, relationships, sexuality, pregnancy, and mental health.[3] These themes are not population frequencies, but they reveal where trust can fail. A patient who has repeatedly been told that bleeding is normal may need more than a referral order. The system may need to demonstrate that the history has finally been heard and will remain visible.

Women can also have hemophilia, including clinically significant symptoms. Systems that encode women only as “carriers” can contribute to missed or delayed care. Recognition pathways should use inclusive language, support condition-appropriate testing, and make specialist expertise available without requiring a patient to overcome a stereotype.

Adolescents with heavy menstrual bleeding present another important interface. A small 2024 prospective study examined 17 adolescents with heavy menstrual bleeding and unexplained bleeding. Genetic variants were found in 10 participants, but the study also involved investigational assays and was explicitly exploratory.[7] Leaders should not turn that small study into a promise of diagnostic yield. Its value is different. It shows why unresolved bleeding may require expertise beyond a routine pathway and why research gaps must be acknowledged honestly.

Health systems can make recognition safer with five operational commitments:

1. Use a structured bleeding-history approach that clinical leaders have reviewed for the local setting.
2. Define urgent red flags and escalation routes separately from nonurgent referral criteria.
3. Give primary care, emergency, dental, surgical, obstetric, and gynecologic teams a visible specialist contact route.
4. Record the history and next action in a place that follows the patient across encounters.
5. Audit referral completion and unresolved cases, not only completed diagnoses.

These commitments do not force clinicians into a single diagnosis. They reduce the chance that a clinically meaningful story disappears between departments.

Illustrative image. A respectful bleeding-history conversation can connect symptoms, prior procedures, and life-stage events before the next decision is made. Evidence context: studies of women’s lived experience and diagnostic delay.[1,3,7]

Figure 1. A proposed route from unexplained bleeding to a portable care plan

This is a proposed operating flow, not a clinical protocol. Clinical leaders must define local decision criteria. The executive responsibility is to remove ownership gaps, create reliable handoffs, and ensure that the plan is accessible where care is delivered.

What the evidence says about life-stage risk

Bleeding risk is not static. Menstruation, pregnancy, delivery, surgery, dental work, trauma, aging, and transitions between pediatric and adult services can expose different needs. A life-stage approach is therefore more useful than treating the diagnosis as a fixed entry in a problem list.

A population-based cohort from Alberta examined 454,400 pregnancies among 311,330 women. Pregnancies associated with inherited bleeding disorders had higher adjusted odds of postpartum hemorrhage, antepartum hemorrhage, and transfusion. The reported odds ratios were 2.3 for postpartum hemorrhage, 2.9 for antepartum hemorrhage, and 2.8 for transfusion. Only 49.5 percent of pregnancies associated with bleeding disorders had documented third-trimester factor checks.[9] The study used retrospective administrative data, so coding, ascertainment, and small subgroups limit interpretation. The findings should support coordinated planning, not prediction for an individual patient.

Figure 2. Maternal outcomes reported in one population-based cohort

Evidence note: Alam et al. 2024.[9] This is one retrospective Canadian cohort. Odds ratios are not absolute risk, and the three estimates should not be pooled or ranked as if they were independent trials.

For executives, the action is to make ownership explicit before a high-risk transition. A pregnant patient with a bleeding disorder may need a shared plan involving hematology, obstetrics, anesthesiology, laboratory services, blood bank, pharmacy, nursing, and the delivery site. A person preparing for surgery may require similarly clear coordination among the procedural team and specialists. A teenager moving into adult care needs a transition process that transfers knowledge, prescriptions, emergency contacts, self-management skills, and follow-up responsibility.

The same principle applies to heavy menstrual bleeding. A retrospective cohort of 67 women with moderate or severe von Willebrand disease in a joint multidisciplinary clinic reported that combination therapy was common and that menstrual bleeding scores improved for many participants over time.[8] The study was conducted in one clinic and cannot isolate the effect of a particular intervention. It nevertheless supports a service-design lesson: complex symptoms often need sustained, coordinated follow-up rather than a one-visit handoff.

Figure 3. Unranked sources of diagnostic and treatment delay

Evidence synthesis: qualitative, adherence, claims, review, and consensus studies.[1,3,5,10,11,15] Branches are intentionally unranked. Organizations should replace them with validated local findings before prioritizing interventions.

Comprehensive care is an operating model, not a destination

Hemophilia treatment centers bring together specialized clinicians and services for people with bleeding disorders. The CDC describes a multidisciplinary model that can include hematologists, nurses, laboratory professionals, physical therapists, social workers, mental health professionals, and other specialists by referral. The model matters because bleeding disorders can affect more than acute bleeding. Joint health, pain, psychosocial needs, reproductive care, medication access, school, work, and emergency preparedness may all require coordination.

Specialty expertise does not release the rest of the health system from responsibility. Patients still receive care in emergency departments, community hospitals, dental offices, primary care clinics, surgical centers, pharmacies, and maternity units. The operating question is whether those settings can reach the appropriate expertise and act from the same plan.

A 2023 retrospective study examined 50 patients with bleeding disorders who underwent 63 major surgeries at an academic hemophilia treatment center. Major bleeding was reported in 4.8 percent of procedures, and readmission in 1.6 percent.[13] The study was small, nonrandom, and conducted at one center. Its matched comparison did not prove equivalence. The useful leadership signal is that perioperative care was organized around specialist planning and that outcomes were measured. Leaders can replicate the discipline of coordination without assuming that one center’s rates will transfer to another setting.

Consensus work on von Willebrand disease also emphasizes equitable, coordinated standards. A modified Delphi process in the United Kingdom and Republic of Ireland achieved consensus across 29 statements and produced eight recommendations.[11] Consensus is not trial evidence, and regional service structures differ. It can still help leaders ask whether their own pathways address diagnosis, access, information, specialist support, and life-stage needs in a coherent way.

Figure 4. The coordinated-care operating system

At the center is the patient and family, with their goals, history, preferences, language needs, daily-life constraints, and emergency information.

The operating system connects six accountable functions:

1. Hematology or the hemophilia treatment center confirms specialist plans, supports condition-specific management, and remains reachable for escalation.
2. Primary care and women’s health recognize symptoms, manage common health needs, coordinate referrals, and prevent the bleeding disorder from becoming disconnected from whole-person care.
3. Emergency, surgery, dentistry, anesthesia, and obstetrics can see the current plan, reach expertise, and document what occurred.
4. Pharmacy, laboratory, blood bank, and supply operations support product access, testing, storage, availability, and contingency planning.
5. Navigation, social work, mental health, language access, and transition support address barriers that clinical instructions alone cannot solve.
6. Data, quality, and governance define measures, review gaps, protect equity, and assign improvement ownership.

The connections should be bidirectional. A plan that only flows out of hematology will become stale. A system learns when emergency events, procedures, patient-reported barriers, and treatment changes flow back to the team responsible for the longitudinal plan.

Illustrative image. Multidisciplinary planning can align specialty care, procedural services, pharmacy, navigation, and the patient before a high-risk transition. Evidence context: perioperative outcomes, multidisciplinary care, and equitable-service consensus.[8,11,13]

Treatment innovation increases the need for operational reliability

Treatment for hemophilia and other bleeding disorders has evolved. Depending on the condition and the individual plan, care may include factor products, nonfactor therapies, antifibrinolytic approaches, hormonal or gynecologic interventions, local measures, or other specialist-directed strategies. Some therapies are episodic, while others are preventive. The appropriate plan belongs to the patient and qualified clinical team.

From an executive perspective, innovation changes workflows. It can alter administration frequency, monitoring, pharmacy operations, education, prior authorization, emergency assumptions, and costs. A Finnish retrospective register study examined adults with hemophilia A or B who switched from standard to extended half-life factor replacement. Weekly infusion frequency decreased, adherence improved in the hemophilia A group, and annualized bleeding rates appeared to decline, while costs increased.[4] The design was observational and country specific. It does not establish what every organization should buy or prescribe. It shows why leaders need a balanced view of outcomes, burden, adherence, and total cost.

Adherence is similarly complex. A Danish national cross-sectional survey reported adherence of 87.1 percent among respondents receiving prophylaxis and 71.2 percent among those using on-demand treatment. It found no correlation between adherence and quality of life.[6] Because the survey was cross-sectional and self-reported, the result should not be interpreted as evidence that adherence does not matter. It does show that quality of life cannot be reduced to one treatment metric.

A small pediatric study identified associations between adherence and factors such as age, peripheral intravenous administration, language used in medical communication, and trust.[5] The sample was only 41, and the findings were exploratory. The operational lesson is to assess burden and communication rather than labeling a patient or family as noncompliant. A missed dose may reflect administration difficulty, supply interruption, cost, language mismatch, competing responsibilities, fear, or a plan that no longer fits daily life.

Executives can support safer treatment operations by asking:

• Is the current medication and emergency plan visible across settings?
• Can the pharmacy and specialty team identify supply interruptions before they become crises?
• Does education match the person’s language, age, health literacy, and administration method?
• Are adolescents progressively given agency before transfer to adult care?
• Do patients know whom to contact after hours?
• Are outcomes reviewed alongside treatment burden and patient goals?

Illustrative image. Transition support should build agency, portable knowledge, and a reliable emergency plan while addressing practical treatment burden. Evidence context: pediatric sociocontextual factors, adult adherence, and treatment-frequency research.[4–6]

Equity is built into each handoff

Equity cannot be confined to a demographic dashboard at the end of the project. It is shaped by every design choice: who receives a structured history, which languages are supported, where specialist care is located, whether telehealth is usable, how prior authorization is managed, whose symptoms are believed, and whether work or transportation makes the plan feasible.

Global differences in registration and access show how infrastructure affects visibility.[10,12] Within a health system, similar dynamics can appear at a smaller scale. A rural patient may face travel barriers. A person who speaks a language other than English may receive complex instructions without adequate interpretation. A menstruating adolescent may avoid disclosure because the environment is not private or respectful. A patient with an undifferentiated platelet disorder may circulate between departments because no one owns the unresolved case.

An equity review should therefore follow the pathway. Compare referral completion, time to specialist review, canceled procedures, emergency-plan availability, treatment interruptions, and transition gaps by factors the organization can lawfully and responsibly assess. Use community and patient advisors to interpret the numbers. A difference is a signal for investigation, not proof of motive or mechanism.

The 2025 qualitative study of Dutch women offers a useful reminder that daily life extends beyond clinical encounters.[3] Work, education, mental health, relationships, sexuality, and reproductive planning are not peripheral to quality. They shape whether information is usable and whether a care plan fits. An equitable pathway makes room for those realities.

Figure 5. A practical measurement table

These are proposed improvement measures, not validated national benchmarks. Each organization should define inclusion rules, data provenance, privacy controls, and balancing measures before use.

Make awareness communication accurate and useful

Public communication should invite recognition without encouraging self-diagnosis. It can explain that bleeding disorders include more than hemophilia, that symptoms can differ, that women and girls can be affected, and that unexplained or disproportionate bleeding deserves a conversation with a qualified clinician. It should also distinguish emergency guidance from routine education.

Avoid claims that one symptom confirms a condition. Avoid presenting registration estimates as prevalence. Avoid implying that all people with the same diagnosis need the same treatment. Avoid using patient stories without meaningful consent or reducing people to crisis imagery.

Useful awareness content can point audiences to trusted resources, including the National Bleeding Disorders Foundation’s Bleeding Disorders Awareness Month materials, the CDC’s information on hemophilia and von Willebrand disease, and the CDC Hemophilia Treatment Center directory. Internal education can connect this observance with the organization’s earlier coverage of Bleeding Disorders Awareness Month 2025 and World Hemophilia Day 2025.

The message to staff should be actionable: listen for a pattern, document it, know the escalation route, and do not let an unresolved concern disappear at the next handoff.

Figure 6. A 90-day implementation agenda

The agenda is intentionally modest. Its goal is to establish a reliable operating loop, not to claim transformation in one quarter. A health system should know more at day 90 than it did at day one: where histories are lost, where plans are inaccessible, which handoffs fail, and who will correct them.

Questions for the board and executive team

1. Where can a patient enter our system with an unexplained bleeding history, and what happens next at each entry point?
2. Can emergency, surgical, dental, obstetric, and primary care teams find a current specialist plan without relying on the patient to reconstruct it?
3. How do we distinguish a placed referral from a completed connection to care?
4. Which symptoms or populations are most likely to be normalized, dismissed, or misclassified in our current workflow?
5. Do language access, transportation, payer rules, pharmacy operations, and treatment burden appear in our improvement design?
6. How do we prepare for procedures, pregnancy, delivery, and pediatric-to-adult transition before risk becomes urgent?
7. Which measures will tell us that awareness produced a safer route rather than more communication alone?

The commitment for March 2026

Bleeding Disorders Awareness Month should make an invisible route visible. It should show patients where to turn, clinicians how to escalate, and leaders where accountability begins and ends. The strongest commitment is not a slogan. It is a system in which a bleeding history is heard once, documented well, evaluated appropriately, connected to expertise, and carried forward in a plan that remains available when it matters.

Healthcare executives do not need to choose individual treatments to lead this work. They need to create the conditions for reliable recognition, specialist partnership, coordinated planning, equitable access, and measurement. When those conditions are present, awareness can become safer care throughout the year.

Trusted public resources

• National Bleeding Disorders Foundation: Bleeding Disorders Awareness Month
• CDC: Hemophilia Treatment Centers
• CDC: About Hemophilia
• CDC: About von Willebrand Disease
• CDC: Testing for Inhibitors and Hemophilia

References

1. Martini T, Pollio B, Ricca I, Albiani R, Borsellino B. Rare inherited autosomal bleeding disorders in women: sex-related bleeding, pregnancy and delivery. A narrative review. Blood Transfusion. 2026;24(3):240–250. https://doi.org/10.2450/BloodTransfus.1186
2. Borhany M, Qureshi H, Ahmed NK, Umair M, Ahmed R. Clinical spectrum, subtype distribution, and treatment outcomes in von Willebrand disease: A prospective study from a hemophilia treatment center in Pakistan. Clinical and Applied Thrombosis/Hemostasis. 2026;32:10760296261422757. https://doi.org/10.1177/10760296261422757
3. van Gastel TCM, Teela L, Degenaar-Dujardin MEL, et al. A qualitative study on the impact of bleeding disorders on the daily life of Dutch women. Women’s Health. 2025. https://doi.org/10.1177/17455057251362582
4. Koivusalo M, Szanto T, Kovalainen T, et al. Switching from standard to extended half-life coagulation factor replacement in haemophilia: Clinical outcomes and costs of care in Finland. Haemophilia. 2025;31(4):722–733. https://doi.org/10.1111/hae.70067
5. Bala NS, Aristizabal P, et al. Assessment of clinical characteristics and sociocontextual factors on medication adherence in children and adolescents with hemophilia. Pediatric Blood & Cancer. 2025;72(7):e31712. https://doi.org/10.1002/pbc.31712
6. Clausen CML, Funding E, Tolver A, Jarden M. Adherence and quality of life in adult patients with haemophilia A, haemophilia B and von Willebrand disease: A national cross-sectional survey. European Journal of Haematology. 2025;114(1):164–172. https://doi.org/10.1111/ejh.14324
7. Sharma R, Johnson V, Pan A, et al. Assessment of rare bleeding disorders in adolescents with heavy menstrual bleeding. Haemophilia. 2024;30(2):490–496. https://doi.org/10.1111/hae.14961
8. Turan O, Gomez K, Kadir RA. Review of interventions and effectiveness for heavy menstrual bleeding in women with moderate and severe von Willebrand disease. Haemophilia. 2024;30(5):1177–1184. https://doi.org/10.1111/hae.15078
9. Alam AU, Wu C, Kaul P, Jain V, Sun HL. Impact of inherited bleeding disorders on maternal bleeding and other pregnancy outcomes: A population-based cohort study. Haemophilia. 2024;30(2):478–489. https://doi.org/10.1111/hae.14922
10. Mahlangu J, Diop S, Lavin M. Diagnosis and treatment challenges in lower resource countries: State-of-the-art. Haemophilia. 2024;30(Suppl 3):78–85. https://doi.org/10.1111/hae.14956
11. Laffan M, Benson G, Farrelly C, et al. An expert consensus to define how higher standards of equitable care for von Willebrand disease can be achieved in the UK and Republic of Ireland. Haemophilia. 2023;29(3):819–826. https://doi.org/10.1111/hae.14765
12. O’Sullivan JM, Tootoonchian E, Ziemele B, et al. Von Willebrand disease: Gaining a global perspective. Haemophilia. 2023;29(4):1104–1112. https://doi.org/10.1111/hae.14804
13. Rhoades R, French Z, Yang A, Walsh K, Drelich DA, McKenzie SE. Perioperative outcomes of patients with bleeding disorders undergoing major surgery at an academic hemophilia treatment center. Clinical and Applied Thrombosis/Hemostasis. 2023;29:10760296231165056. https://doi.org/10.1177/10760296231165056
14. Laliberté J, Coffin D, Haffar A, et al. Theory of change and strategic priorities of the World Federation of Hemophilia. Haemophilia. 2023;29(1):45–50. https://doi.org/10.1111/hae.14673
15. Roberts JC, Malec LM, Halari I, Hale SA, Oladapo A, Sidonio RF Jr. Bleeding patterns in patients before and after diagnosis of von Willebrand disease: Analysis of a US medical claims database. Haemophilia. 2022;28(1):97–108. https://doi.org/10.1111/hae.14448