Great news for the rare disease community: for the first time, the 193 United Nations (UN) Member States adopted a political declaration on universal health coverage (UHC) that includes the mention of Rare Diseases on September 23rd, 2019! This significant milestone is the result of various advocacy steps taken over …
The Pediatric and Primary Lymphedema Working Group (PPL WG) held a face-to-face meeting at St. Georges University Hospital in London from September 12-13th, 2019. This 2-day event was hosted in our HCP Member St George’s University Hospital and co-chaired by Dr. Malou van Zanten (PPL WG member), Prof. Sahar Mansour …
A new scientific paper entitled “Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database“ has just been published in the European Journal of Human Genetics. This paper is co-authored by Orphanet (coordinated by INSERM, the French National Institute of Health and Medical Research), EURORDIS – Rare Diseases …
We have just released a new Pill of Knowledge (PoK) video on our YouTube channel entitled “Role of patient advocates in a European Reference Network, from the patient team of Heritable Thoracic Aortic Diseases (HTAD)“. This Pill of Knowledge features members of the HTAD European Patient Advocacy group (ePAG) explain …
The 2019 European Society of Cardiology (ESC) Congress took place from August 31-September 4, 2019 in Paris France, and VASCERN member turnout was high, particularly from the Heritable Thoracic Aortic Diseases Working Group (HTAD WG)! Notable presentations by VASCERN members included: Evidence-based treatment of dilated ascending aorta by Prof Julie …
The Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG) has just published an article entitled Safety of direct oral anticoagulants in patients with hereditary hemorrhagic telangiectasia in the Orphanet Journal of Rare Diseases. It is equally co-authored by one member of EuroBloodNet. This publication examined the safety of three direct oral …
We are very proud to release the new VASCERN information leaflet! This leaflet contains a concise overview of our network, including the presentation of our five Rare Disease Working Groups, our members (healthcare providers and ePAG patient organisations) and highlights the various services and material we offer to patients and …
We would like to extend a warm welcome to our new Project Assistant: Anne-Marie Defo. Anne-Marie joined us at the end of August, replacing our previous Project Assistant, Aurélie Collomb. Here’s what she has to say: My name is Anne-Marie Defo and I am glad to join VASCERN as the …
The French network on rare multisystemic vascular diseases (FAVA-Multi) has released a series of tutorial videos for children with Pediatric and Primary Lymphedema (PPL). These videos were filmed during a therapeutic patient education trip organised by the Reference Center for Primary Lymphedema at Hôpital Cognacq-Jay (VASCERN member of the PPL-WG). …
With the bilateral cooperation agreement signed, VASCERN has its first official Affiliated Partner: Hospital Universitari Vall d’Hebron from Barcelona, Spain! This Spanish Healthcare Provider, which is an Associated National Centre, will be represented by Dr. Arturo Evangelista and Dr. Gisela Teixido, two cardiologists working in the Expert center with specialized …