On World Oral Health Day 2026, the EHC is launching a new campaign to address the critical gaps in oral health care for people with bleeding disorders. Drawing on the lived experiences of our community, we are calling on policymakers, healthcare systems, and medical professionals to take action to ensure safe, accessible, and coordinated dental care for all.

People with bleeding disorders face significant barriers to accessing routine dental care. Many are refused treatment by dentists unfamiliar with their conditions, while others experience prolonged bleeding after procedures due to inadequate preparation or coordination with their haemophilia treatment centres.

Eglantine, 25, France (Factor V Deficiency): “I have been refused a few times when I said I had a factor V deficiency. Now, I omit to say I have a bleeding disorder. Health professionals should be more aware of these pathologies to be able to take good care of these patients.”

The consequences can be severe. One community member experienced bleeding for nine days following a wisdom tooth extraction. Another bled for two weeks when the clotting factor was unavailable. These are not isolated incidents—they reflect systemic failures in how healthcare systems support people with bleeding disorders.

A key issue is the lack of coordination between dental professionals and haemophilia specialists. Dentists often lack knowledge about bleeding disorders and are reluctant to provide care, while specialist dental services remain inaccessible to many patients.

Marion, 37, Austria (Factor VII Deficiency): “Since Factor VII Deficiency is so rare, no one knows about it. I am fully responsible for having everything under control. A cooperation between a haematologist and a dentist would be great.”

When systems work well, the difference is clear. Community members who have found knowledgeable, collaborative dentists report positive experiences and better health outcomes.

Martin, 61, United Kingdom (Haemophilia A): “I eventually found a great dentist. They are aware of haemophilia and the associated risks during treatment. The experience now is much better.”

Our policy priorities

As the European Union (EU) advances its work on rare diseases through the European Reference Networks (ERNs) and the EU4Health programme, oral health must be explicitly recognised within these frameworks as part of comprehensive and integrated care pathways. 

The EHC is calling for three key actions:

• Integration of oral health into Rare Disease Plans — Oral health must be formally embedded within national Rare Disease Plans and reflected in EU rare disease policy initiatives, ensuring preventive dentistry, early intervention, and safe dental care are recognised as core elements of bleeding disorders management.
• Stronger multidisciplinary care — Structured referral pathways and closer collaboration between Haemophilia Treatment Centres, Centres of Expertise within the ERNs, and dental services are essential. Coordinated care models should ensure timely access to appropriately trained dental professionals and shared clinical protocols for invasive procedures.
• Investment in Research and Education — Targeted research funding under EU and national health programmes, the development of evidence-based clinical guidelines, and strengthened professional education are needed to equip healthcare providers with the knowledge and confidence to deliver safe oral care to people with bleeding disorders.

These policy priorities align with ongoing discussions around the EU Rare Disease Framework and the EU4Health Programme, and provide clear, actionable goals for national member organisations to advocate for at the national level.

Oral health is not a luxury: it is a fundamental component of overall health and quality of life. People with bleeding disorders deserve access to safe, coordinated dental care without fear of refusal or complications.

Learn more

• Hear more voices sharing their lived experiences with dental care from the bleeding disorders community on the EHC Community platform HERE.
• Explore the EHC’s work and resources on Dental Care HERE.