Expertise

The rationale behind this thematic grouping is:

1) Easy to recognise for patients and doctors to address patients
2) Clear needs with regard to:
– Reducing the delay in diagnosing the disease;
– Improving awareness for the disease among caregivers (GPs, school doctors, general public);
– Reducing care gaps/lost-to-follow up during the transition phase from pediatric to adult care;
– Improving the quality of family counseling;
– Reducing redundant tests/increasing the use of relevant tests for the disease;
– Improving medical knowledge by shared experience, and clinical trials.

Rare Multisystemic Vascular Diseases are :

  • Vascular diseases, including rare, low prevalence and complex disorders that affect different types and sizes of vessels, namely:

– Aortic vessels
-Medium Size Arteries
– Small Arteries
– Veins
– Capillaries
– Lymphatic vessels

  • These Vascular Diseases involving Multisystemic consequences and external signs – 1st and 2nd plan, which justify and need the multidisciplinary approach to patient care, tackled by this network.
  • This multidisciplinary approach involves a lot of different specialists working in the HCPs/ Centres of Expertise, Members of this Network. For instance: general clinicians, Cardiologists, Clinical Geneticists, Genetic Counselor, Cardiac surgeons, Ophtalmologists, Orthopedic surgeons, Physiotherapists, Cardiovascular, Neurological and Interventional radiologists, Vascular surgeons, Obstetricians, Gynecologists, Psychologists, Pulmonologists, Hematologists, Obstetric anesthetists, Pulmonary function technicians, Dieticiens, Blood transfusion technicians, Gastroenterologists, Nurses, Pharmacists…
Rare or Complex Disease(s), Condition(s) or Highly Specialised Intervention(s) covered by VASCern Measure within VASCern

Estimated Total Number of Patients (Visited, Treated, or Followed) per Year

Estimated Total Number of New Patients per Year Estimated Total Number of Procedure per Year
Adults Paediatric
Range: 18
Adults Paediatric
Range: 18
Adults

Paediatric
Range: 18

HHT: Definite by 3 Curacao Criteria or molecular diagnosis 1487 172 391 45 5076 350
PPL 900 300 225 75 360 120
HTAD : MFS/LDS/AOS/FTAAD/ATS/BAV-TAA 6784 1818 2040 607 15452 4754
MSA: vEDS 472 76 172 24 254 41
VASCA 1770 2900 540 815 1180 1725

VASCERN List of Abbreviations