👉 The Joint workshop between Estonia and Latvia on patients’ rights in cross-border healthcare and European Reference Networks will be held in Valga, on 26 September 2024. 👉 👉 Register: https://lnkd.in/dwxNKuUs. The workshop will be in English, and you have the option to attend it online. #crossborderhealthcare #crossborder #patientsrights #health #healthcare #workshop #ERNs #rarediseaes #patient #EU #EUhealth European Commission
ERN GENTURIS
Ziekenhuizen en gezondheidszorg
Nijmegen, Gelderland 583 volgers
European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis).
Over ons
ERN GENTURIS is the European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). Genturis patients are at very high hereditary risk of developing common cancers, which are often located in multiple organ systems. In case they are diagnosed with cancer they need different treatment and follow-up as compared to non-hereditary cancers. ERN GENTURIS comprises 51 highly specialised healthcare teams in 23 countries. ERN GENTURIS is committed to improve access to diagnosis, treatment and the provision of high-quality healthcare for genturis patients no matter where they are in Europe. ERNs are virtual networks gathering doctors and researchers with high expertise in the fields of rare or low-prevalence and complex diseases. Launched in 2017 by the European Commission, 24 ERNs involve over 1400 highly specialised healthcare teams, located in over 300 hospitals in 27 EU Member States and Norway. ERNs are funded by the EU.
- Website
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https://www.genturis.eu/l=eng/Home.html
Externe link voor ERN GENTURIS
- Branche
- Ziekenhuizen en gezondheidszorg
- Bedrijfsgrootte
- 51 - 200 medewerkers
- Hoofdkantoor
- Nijmegen, Gelderland
- Type
- Partnerschap
- Opgericht
- 2017
- Specialismen
- healthcare, rare diseases, cancer, hereditary cancer, hospital, genetics, genetic testing, genetic counselling, laboratory, research, education and training , guidelines, patient pathways, health en gene
Locaties
Updates
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📅 THIS FRIDAY 30th of August 2024 at 14:00 and 15:30 a Public webinar “Towards a World Health Assembly Resolution on Rare Diseases 2025”. The webinar, organised by RARE DISEASES INTERNATIONAL, the International Alliance on Rare Diseases, is co-hosted by the Arab Republic of Egypt, the State of Qatar and the Kingdom of Spain. The Minister of Health of the Government of Spain, Mónica García Gómez, will participate in the webinar along representatives from the World Health Organization, national authorities, experts, the patient community and other stakeholders from around the world. The aim of the webinar is to highlight and discuss the need of a World Health Assembly Resolution on Rare Diseases and to explain in more detail the opportunities to improve the lives of persons living with a rare disease (PLWRD) and the need to make the Resolution a reality. 📝 You can register: https://lnkd.in/dDAfrxdH 👉 Find more information here: https://lnkd.in/eFzRD6iA
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Check out our website for more info about ERN GENTURIS and hereditary #cancer: https://lnkd.in/d9yvSviA
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We're pleased to announce the publishing of ERN's first definitive European clinical guidelines for the diagnosis and management of BHD. This is a major step forward, simplifying care for patients & supporting clinicians. We are proud to be a part of this milestone project. In our new article, we take a closer look at the guidelines and explain more. Read it here: https://lnkd.in/eqv2zscw
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✉ Our new newsletter is sent out! Stay informed about news and topics around ERN GENTURIS. 👉Subscribe to our newsletter here: https://lnkd.in/d9yvSviA #ERNGENTURIS #hereditarycancer #raredisease #gene #genetics #ERN #cancer #oncology #newsletter #news #geneticsnews #genturis #diagnosis #cancerdiagnosis
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💡 Would you like to know what the Bloom Syndrome (BS) is? Bloom syndrome (OMIM#210900, ORPHA:125) is a multisystem #genetic #disorder that increases the risk of #cancer at all ages. The disease is extremely rare (no available prevalence estimate), except for individuals of Ashkenazi Jewish ancestry, where the prevalence may be about 1 in 48,000. The main clinical manifestations are: 👉 Growth deficiency, both at and after birth 👉 A characteristic facial appearance is often present, with prominent nose and ears, and mandibular hypoplasia 👉 Very sparse subcutaneous fatty tissue 👉 Sensitivity to sunlight, that leads to the development of facial erythema 👉 Immune abnormalities, with low immunoglobulin serum levels 👉 High incidence of hyperglycaemia and diabetes 👉 High risk for tumours at all ages, with a tendency to develop at earlier ages compared to the general population. Find out more: https://lnkd.in/gFa5GD8y #ERNGENTURIS #hereditarycancer #bloomsyndrome #AshkenaziJewish #raredisease #cancer #tumour #healthcare #education #health #knowledge #cancerknowledge
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As the ERN GENTURIS clinical practice guidelines for the diagnosis, surveillance and management of people with Birt-Hogg-Dubé syndrome was recently published, it is good to know what is Birt-Hogg-Dubé syndrome. Check out the post 👇 👉 To download the complete #guideline, the EJHG publication, the pocket guide and the plain language summary in English, please go to the ERN GENTURIS website: https://lnkd.in/gkJj5dMr
💡 Would you like to know what is Birt-Hogg-Dubé Syndrome? Birt-Hogg-Dubé syndrome is a rare genetic disorder (1 in 100,000 individuals) that increases the risk of multiple benign (non-cancerous) and malign (cancerous) #tumours in young adults and adults, with different manifestations and severity. Affected individuals can develop: - Benign #skin tumours: particularly on the face, neck and upper chest that appear around 20-30 years of age and become larger and more numerous over time. - #Pulmonary manifestations: 89% of subjects have bilateral and multiple cysts in the lungs and 25% develop one or more pneumothoraces (abnormal accumulation of air in the chest cavity that may result in the collapse of a lung). - Benign and malign (cancerous) #kidney tumours: individuals are at a sevenfold increased risk for renal tumours. Typically these tumours are bilateral, multifocal, generally slow growing and appear around 40-50 years of age. Find out more: https://lnkd.in/dGanmv4N #ERNGENTURIS #hereditarycancer #adults #youngadults #raredisease #cancer #tumour #healthcare #healthprofessionals #education #health #knowledge #cancerknowledge #sharecarecure
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💥 JUST PUBLISHED: ERN GENTURIS clinical practice guidelines for the diagnosis, surveillance and management of people with Birt-Hogg-Dubé syndrome now online! CONGRATULATIONS and thanks to all authors, ERN-LUNG - European Reference Network for rare respiratory diseases, ERKNet and EURACAN for reaching out to their members to participate in the Delphi, and all Delphi participants for their participation in the Delphi survey. 👉 To download the complete #guideline, the EJHG publication, the pocket guide and the plain language summary in English, please go to the ERN GENTURIS website: https://lnkd.in/gkJj5dMr #ERNGENTURIS #bhdsyndrome #birthoggdubé #syndrome #guidelines #clinicalpractice #guideline #diagnosis #surveillance #management #genturis #hereditarycancer #raredisease #cancer #tumour #healthcare #healthprofessionals #health #knowledge
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𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞: https://lnkd.in/gEGJ94-H
📆 𝐓𝐨𝐝𝐚𝐲!📢 📆 ❗️#Webinar with Jan Degenhardt, moderated by Roman-Ulrich Müller & Jean-Baptiste Lattouf 📚#HLRCC : Hereditary Leiomyomatosis and Renal Cell Carcinoma 🏘️ Joint initiative of ERN GENTURIS & ERN eUROGEN ⚙️Organised by European Renal Association (ERA) & European Reference Network 📆 July 30th 🕓 04:00 - 05:00 pm CET 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞: https://lnkd.in/gEGJ94-H See all our upcoming webinars: https://lnkd.in/e9MWQwAS #ERKNet #Kidney #RareKidneyDisease #RareDisease
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Check out and apply👇🏼
Health literacy is a crucial aspect of #cancer prevention and care. With a budget of €5 million, one topic of the #EU4Health call for proposals on cancer aims to support health literacy of patients, health professionals and citizens to reduce inequalities in cancer prevention and care. Deadline to apply: 10 October https://lnkd.in/dZ6qVAQ4 #EUCancerPlan