HOME | European Reference Networks - ERNs
Time 2022-07-28 07:16:59Web Name: HOME | European Reference Networks - ERNs
WebSite: http://www.erncare4ua.eu
ID:262531
Keywords:
European,HOME,Reference,ERNsDescription:
Short news
ERNs and children’s hospitals work together to support Ukrainian children with rare diseases
Read moreThe 24 European Reference Networks (ERNs) for rare and complex diseases are united to support all Ukrainian patients.
ERNs are specialized in the diagnosis and treatment of rare/ very rare illnesses in almost all fields of medecine including rare cancer.
The ERN 1600 experts centres are embedded in more than 300 EU hospitals, generally distributed in most or all EU countries (including neighbouring Ukraine) and Norway.
ERNs offer the Rare Diseases Hub Ukraine, a dedicated focal point to provide specialized medical support to rare diseases patients inside or outside Ukraine.
This website provides information on each of the 24 ERNs as well as general information & news.
Support provided by each ERN
Finding a center in the EU for a rare/ultra-rare disease Medical support for diagnosis Medical support for treatment issues (drugs, surgery, etc…) Medical support for medication changes/shortages Other clinical taylored help via a general contact point Rare Diseases Hub UkraineSurvey for ERNs to report Ukrainian refugees care
Read moreShort news showing the collaboration between ERNs
Read moreFind a health care professional
Read moreERNs support for healthcare professionals
Read moreCall from the Network of Parliamentary Advocates for Rare Diseases - European Parliament
Read more24 European Reference Networks (ERNs)
ERN BOND
European Reference Network on rare bone diseases
Contact:info@ernbond.eu
Website<?xml version="1.0" encoding="UTF-8"?>ERN CRANIO
European Reference Network on craniofacial anomalies and ear, nose and throat (ENT) disorders
Contact:ern-cranio@erasmusmc.nl
WebsiteEndo-ERN
European Reference Network on Rare Endocrine Conditions
Contact:info@endo-ern.eu
Website<?xml version="1.0" encoding="UTF-8"?>ERN EpiCARE
European Reference Network on rare and complex epilepsies
Contact:info@epi-care.eu/ukraine.epilepsies@epi-care.eu
WebsiteERKNet
European Reference Network on kidney diseases
Contact:contact@erknet.org
Website<?xml version="1.0" encoding="UTF-8"?>ERN-RND
European Reference Network on neurological diseases
Contact:info@ern-rnd.eu
WebsiteERNICA
European Reference Network on inherited and congenital anomalies
Contact:ern-ernica@erasmusmc.nl
Website<?xml version="1.0" encoding="UTF-8"?>ERN LUNG
European Reference Network on respiratory diseases
Contact:info@ern-lung.eu
WebsiteERN Skin
European Reference Network on skin disorders
Contact:coordination@ern-skin.eu
Website<?xml version="1.0" encoding="UTF-8"?>ERN EURACAN
European Reference Network on adult cancers (solid tumours)
Contact:contact@euracan.eu
WebsiteERN EuroBloodNet
European Reference Network on haematological diseases
Contact:coordination@eurobloodnet.eu
Website<?xml version="1.0" encoding="UTF-8"?>ERN eUROGEN
European Reference Network on urogenital diseases and conditions
Contact:eurogen@uroweb.org
WebsiteERN EURO-NMD
European Reference Network on neuromuscular diseases
Contact:info@ern-euro-nmd.eu
Website<?xml version="1.0" encoding="UTF-8"?>ERN EYE
European Reference Network on Rare Eye Diseases
Contact: contact@ern-eye.eu
WebsiteERN GENTURIS
European Reference Network on genetic tumour risk syndromes
Contact:genturis@radboudumc.nl
Website<?xml version="1.0" encoding="UTF-8"?>ERN GUARD-HEART
European Reference Network on diseases of the heart
Contact:contact@guardheart.ern-net.eu
WebsiteERN ITHACA
European Reference Network on congenital malformations and rare intellectual disability
Contact:coordination@ern-ithaca.eu
Website<?xml version="1.0" encoding="UTF-8"?>MetabERN
European Reference Network on hereditary metabolic disorders
Contact:coordination@metab.ern-net.eu
WebsiteERN PaedCan
European Reference Network on paediatric cancer (haemato-oncology)
Contact:ERNPaedCan@ccri.at
Website<?xml version="1.0" encoding="UTF-8"?>ERN RARE-LIVER
European Reference Network on hepatological diseases
Contact:ERN.RareLiver@uke.de
WebsiteERN ReCONNET
European Reference Network on connective tissue and musculoskeletal diseases
Contact:ern.reconnet@ao-pisa.toscana.it
Website<?xml version="1.0" encoding="UTF-8"?>ERN RITA
European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases
Contact:contact-rita@ern-net.eu
WebsiteERN TRANSPLANT-CHILD
European Reference Network on Transplantation in Children
Contact:coordination@transplantchild.eu
Website<?xml version="1.0" encoding="UTF-8"?>VASCERN
European Reference Network on Rare Multisystemic Vascular Diseases
Contact:vascern.coordination@aphp.fr
WebsiteERN video for patients and health professionals
Find out what the European Reference Networks (ERNs) are and how they might support them to identify diagnosis or treatment, in the case their health professional considers the support of the ERNs is necessary.
TAGS:European HOME Reference ERNs
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