News and events
All 24 European Reference Networks (ERNs) launched a dedicated website (https://www.rarediseaseshub4ua.org/) and social media campaign (#ERNcare4Ua & https://www.erncare4ua.com/) to collect information to help health professionals find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.
With the ongoing war, a large number of Ukrainian citizens have very difficult access to care in Ukraine or are fleeing to EU countries, mainly Eastern ones for the time being. Many of those refugees have or will have health problems. EU governments have clearly committed to ensure adequate healthcare to those refugees, including patients requiring chronic treatments.
Some of those Ukrainian citizens will however suffer from one of the known 6000 rare diseases, like about 6% of the European Union Population. For those disorders, sometimes very rare, expertise is often lacking in many regions or even countries, and treatments may be very expensive and/or difficult to obtain in many centers.
Our 24 ERNs for rare diseases networks are specialized in the diagnosis and treatment of rare/very rare illnesses in each of the 24 medical specialties. They include hospitals (healthcare providers or HCP) and university centers, distributed in most or all EU countries (depending on the ERN), including in EU countries neighbouring Ukraine.
The Coordinators of the 24 European Reference Networks (ERNs) have also issued a statement to support people with Rare Diseases and Complex Conditions affected by the war in Ukraine.
If you are a patient with a genetic tumour risk syndrome coming from Ukraine or a treating physician and you require medical assistance, please contact us at: email@example.com.
WE ARE HERE TO HELP!
More information on the hub is available here.
Posted on 22 March 2023
We would like to invite you to our Public Symposium at the Solve-RD Final Meeting 2023: The Impact of Solve-RD on Research & Care of Rare Disease Patients!
The programme is available here.
Date: 26 April 2023
Time: 8:30-12:30 CEST
Location: Prague, Czech Republic & online
Posted on 16 February 2023
In the context of EJP RD’s ERN Workshops, a workshop entitled “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” is being organized by ERN GENTURIS member Arvids Irmejs from Pauls Stradins Clinical University Hospital.
Posted on 16 February 2023
In the context of EJP RD’s ERN Workshops, a workshop entitled “EJP RD – ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach” is being organized by ERN GENTURIS member Dr Marco Vitellaro.
Posted on 3 February 2023
With the publication of the Editorial paper “European collaboration on genetic tumour risk syndromes” by Hildegunn H. Vetti, Ignacio Blanco and Fred H. Menko,the ERN GENTURIS special issue of the European Journal of Medical Genetics is now complete, containing 13 publications by ERN GENTURIS members.
An overview of ERN GENTURIS publications is available here.
Posted on 25 January 2023
Registration for this EJP RD ERN workshop on 29-30 September in Turku, Finland, co-organised by ERN GENTURIS member Maria Haanpää, is now open
🚨 Registration deadline: 2 June
📆 Date: 29-30 September
For more information and registration, see:
Posted on 17 January 2023
The open-access publication on the ERN GENTURIS guidelines on Neurofibromatosis 1 is now online: doi.org/10.1016/j.eclinm.2022.101818.
Additional information is available on our new Neurofibromatosis 1 guideline webpage