Vascular Ehlers-Danlos syndrome - for you as a referrer
Vascular Ehlers-Danlos Syndrome (vEDS) is a rare and serious inherited connective tissue disease that affects blood vessels and internal organs. Uppsala University Hospital/Region Uppsala has been licenced to be the only hospital in the country to provide National Highly Specialised Care (NHV) for Vascular Ehlers-Danlos Syndrome (vEDS) in children and adults.
Vascular Ehlers-Danlos syndrome - for you as a referrer
Vascular Ehlers-Danlos Syndrome (vEDS) is a rare and serious inherited connective tissue disease that affects blood vessels and internal organs. Uppsala University Hospital/Region Uppsala has been licenced to be the only hospital in the country to provide National Highly Specialised Care (NHV) for Vascular Ehlers-Danlos Syndrome (vEDS) in children and adults.
Referral to National Highly Specialised Care (NHV) in vascular Ehlers-Danlos syndrome
Patients with suspected or confirmed vEDS, regardless of age, must be referred to a National Highly Specialised Care (NHV) unit for the following:
- Multidisciplinary assessment and information to the patient.
- Deciding on and initiating medical treatment.
- Deciding on and, if necessary, carrying out emergency and elective interventions.
- Pre-pregnancy counselling and management of pregnancy.
- Regular follow-up in consultation with the home region
If the diagnosis cannot be established after the initial assessment, but suspicion of vEDS remains, the patient should also be referred to a National Highly Specialised Care (NHV) unit for further assessment.
About us
Uppsala University Hospital has a special clinic for this patient group that offers all patients, regardless of age, a multidisciplinary assessment and regular follow-up. The team includes specialists in clinical genetics, internal medicine, cardiology, vascular surgery and paediatric cardiology. There are dedicated contact nurses who coordinate care for both adults and children.
In addition to diagnosis, the focus is on preventive medical treatment and individualised follow-up programmes in collaboration with the local hospitals, as well as preventive and emergency surgical treatment when necessary.