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Introduction

Rare Disease Working Groups

The rare vascular diseases in VASCERN are organized into six Rare Disease Working Groups (RDWGs). Each RDWG is composed of clinicians and patient representatives who work together to develop guidelines, recommendations, and educational resources for the diagnosis and management of specific rare vascular diseases.

The rare multisystemic vascular diseases are organized into groups for two reasons. Firstly, it helps patients and doctors to identify and address these complex vascular disorders easily. Secondly, it provides clarity on the needs that exist with these diseases, such as improving diagnosis times, increasing awareness among caregivers and the public, improving the quality of family counseling, reducing care gaps during the transition from pediatric to adult care, using relevant tests, and sharing medical knowledge and experiences through clinical trials.

 

Our six working groups

  • Hereditary Haemorrhagic Telangiectasia (HHT-WG): Focuses on improving the care and understanding of HHT, a rare condition that causes abnormal blood vessel formation and frequent nosebleeds.
  • Heritable Thoracic Aortic Diseases (HTAD-WG): Focuses on conditions like Marfan Syndrome and Loeys-Dietz Syndrome, which affect the aorta, the largest artery in the body.
  • Medium-Sized Arteries (MSA-WG): Focuses on Vascular Ehlers-Danlos Syndrome (vEDS), a rare condition that weakens arteries and increases the risk of ruptures.
  • Neurovascular Diseases (NEUROVASC-WG): Focuses on rare conditions that affect blood vessels in the brain, such as CADASIL and Moyamoya disease.
  • Pediatric and Primary Lymphedema (PPL-WG): Focuses on rare genetic forms of lymphedema, which causes swelling due to fluid buildup.
  • Vascular Anomalies (VASCA-WG): Focuses on vascular anomalies, such as lymphatic and capillary malformations, which affect blood and lymph vessels.

 

Explore more

Click on the graphic below to visit each working group’s page. There, you will find detailed information about the diseases they focus on, and the tools they have created to make life better for patients.

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