News

The ESCP Project is an on-going collaboration between ERN PaedCan and SIOP Europe’s Clinical Trial Groups (ECTG), aiming to develop approved clinical recommendations that reflect current best practices for each common childhood cancer type. Read more

Healthcare providers who are members of ERNs are connected through a dedicated IT platform and, using a variety of telemedicine tools, offer access to expertise and knowledge of multidisciplinary teams, enabling patients to receive the best advice for treatment and diagnosis. Read more

Ahead of the Rare Disease Day, the European Commission will publish a booklet celebrating the dedication and expertise of the European Reference Networks that make a tangible difference to the lives of patients with rare diseases and their families.nnTwo new factsheets will also be available on how the European Commission works on Rare Diseases and the… Read more

The French Foundation for Rare Diseases has announced the opening of a new facilitation window of the MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th. This update will be available until December 2nd 2023.nnIn this course, you’ll get to learn from experts about how medicines are developed, tested in clinical trials, approved by regulators, and… Read more

The ERN PaedCan has co-signed an open letter in which the ERN Network Coordinators and people living with a rare disease across Europe have asked Ursula von der Leyen (President of the European Commission), Roberta Metsola (President of the European Parliament) and the Heads of Governments of EU Member States to stand by the ERNs… Read more

Register today to the Course on Predisposition to Pediatric Malignant Diseases. Learn more here. Read more

nnWe are pleased to announce that the 10th General Assembly (GA) of the European Reference Network for Paediatric Oncology (ERN PaedCan) will take place virtually on Wednesday 23 November from 2:00 PM to 6:00 PM CET.nnThe objective of the meeting is to provide an update on the project’s latest achievements and outlook. This special occasion… Read more

n EVENT INFO : n n Start Date: 5 November 2022 n Start Time: 07:30 n End Date: 5 November 2022 n End Time: 16:00 n Location: Charenton-le-Pont, France n nIn this workshop, a state-of the-art overview on clinical and molecular aspects of rhabdoid tumors will be given.  This refers both to clinical aspects of… Read more

nn nn nn nn nn nn nn nnUniversity Medical Centre Groningen (UMCG) and Fondazione Telethon (FTELE) along with other EJP RD partners are organizing an EJP RD Training Workshop titled “Genetic Biobanks for Rare Disease Research” targeted at biomedical researchers, medical professionals, and biobank managers who want to learn about genetic biobanks in rare disease research.nnThe training workshop will take place over two days on June 14th – 15th from 09.00 – 17.00… Read more

This meeting will take place on 20-21 May 2022 at Royal Olympic Hotel in Athens.nnThe meeting will be held in hybrid format and registration for on-line participation does not have a deadline. The activity will be in English and it is addressed to health care professionals involved in the field of Pediatric Hematology-Oncology.nnFind out more… Read more

nnAll 24 European Reference Networks (ERNs) have launched a joint dedicated website and social media campaign to collect information to help Ukrainian patients with rare diseases for diagnosis, treatment, advice.nnThe 4 ERNs relevant to rare cancers are of course included: PaedCan, EURACAN, EuroBloodNet and GENTURIS.nnThe website is provided in 10 languages, including Ukrainian. It includes:n… Read more

We would like to kindly invite you to the 9th ERN PaedCan General Assembly, scheduled to take place virtually on 9 February 2022. nnThis virtual General Assembly is open to all members of the European peadiatric oncology community. We encourage you to register and engage in the discussions.nnThis virtual meeting will take place in the afternoon on 9… Read more

Institut Curie participates in a new international MD-PhD program, EMERALD, that offers 42-months fully-funded positions for Medical Doctors who would like to pursue a PhD.nnThe first call for application is now open until Nov 14th 2021. Institut Curie is offering one position for a PhD on Molecular biology to refine diagnostic and therapeutic strategies in… Read more

nnWe are looking forward to meeting you online on 30.11 – 01.12.2021 during our ERN PaedCan General Assembly Meeting. (30 November 2021 (14h00 – 18h00) – 1 December 2021 (10h00 – 14h00))nnPlease register here until 23 NovembernnAn agenda and dial-in links for both days will follow in due time. Read more

nn nnWe kindly invite you to join the 1st Educational webinar within the ERICA Project (WP5,Task 5.3.) on the Current research services available for the rare disease community.nnIn this webinar, Anton Ussi from EATRIS will introduce the cutting edge resources and research services provided by the European Life Science Research Infrastructures (LS RIs) in the field of rare diseases. This webinar will empower ERN… Read more

nn nn nn nn nn nnThe ERN PaedCan and Young SIOPE Interactive Webinar Series on Most Challenging cases in Paediatric Oncology has been a huge success so far, and therefore, we are pleased to announce that we will continue with this initiative in 2022.nnSix interactive webinars will be held next year to discuss difficult clinical cases covering different tumour types.… Read more

nn nnThe ESCP Project is an on-going close collaboration with ERN PaedCan and SIOP Europe’s Clinical Trial Groups (ECTG) – aiming to develop approved clinical recommendations reflecting current best practice for each common childhood cancer type. The ultimate aim is to improve outcomes and to increase childhood cancer survival and quality of life by providing these… Read more

We are pleased to invite you to the launch meeting of the ERN Expert Platform for Newborn Screening that will be held on Tuesday 14th September at 10:00-12:00 CET.nnDescriptionnnEurope is home to the most equal societies in the world, the highest standards in working conditions, and broad social protection. A Europe who provides its assistance… Read more

Dear Colleagues,nnWe are happy to announce that the registration for the first Session of Paris 1st Course on Pediatric CNS Tumors: integrating scientific and clinical approaches is now open!nnnn nn nn nn nn nn nnThe course is co-organized by The Training unit and the SIREDO center of Institut Curie (Care, Innovation, Research in Childhood Cancer, ADOlescent and young adults) with clinicians… Read more

The Share4Rare platform is a safe space where patients and carers can connect, share knowledge and get involved in scientific research.nn#S4RMonth 2021 activities:nnThe role of genetics in the diagnosis of rare diseasesnnWebinar on the 4th Feb, 17:00 CET. Speakers:nnDr. Gemma Marfany, PhD (genetist, UB, CIBERER)nnDr. Lluís Montoliu, PhD (genetist, CNB-CSIC, CIBERER)nnRegister herenn nnCaring for caregivers and… Read more

Research Training WorkshopsnnThe goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be… Read more

nn nn nn nn nn nnMost Challenging Cases in Paediatric Oncology – You are invited to an Interactive Webinar Series of ERN PaedCan and Young SIOPEnnWe are pleased to invite you to participate in the new upcoming interactive webinars series on the most challenging cases in paediatric oncology, an ERN-PaedCan and Young SIOPE initiative.nnFrom February 2021, monthly 30-minutes webinars will be organized: 15-minute case presentations by… Read more

PAEDIATRIC HAEMATO-ONCOLOGY EMERGENCIES nThis pathway has been released with the collaboration of SIOP Europe and ERN.nnYou can access all sessions free of charge live or watch recordings on demand.nn_____________________n Pathway sessions: n n n Primary information on cancer diagnosis to patients and parents n n Ulrike Leiss n 15.03.2021 n n n n n n Neurological… Read more

We would like to invite you to join two state of the art lectures on NGS in Healthcare, which will be livestreamed on January 26th at 1 p.m. CET, in the context of the INSTAND-NGS4P project, which CCRI is part of.n n Ivo Gut (CNAG-CRG, Spain):  “Experiences with Good Genomic Practice” n Sir Mark Caulfield… Read more

The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks. The European Rare disease research Coordination and support Action (ERICA) Project received a positive evaluation for a H2020 grant to establish a structural framework in support of the research activities of the ERNs. ERICA will strengthen research and… Read more

The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks The European Rare disease research Coordination and support Action (ERICA) Project received a positive evaluation for a H2020 grant to establish a structural framework in support of the research activities of the ERNs. ERICA will strengthen research and… Read more

We invite you to join the CME accredited E-Session by the European School Oncology.nnTitle: The Toronto Childhood Cancer Stage Guidelines: practical applicationnnDate and time: 19 November 2020, 18:15-19:00 CETnnFree accessnnMore information here. Read more

12th Biennial Childhood Leukemia and Lymphoma VIRTUAL SymposiumnnDue to the Coronavirus (COVID-19) pandemic, the 12th Biennial Childhood Leukemia and Lymphoma Symposium (CLLS) was postponed to 2021. Due to the uncertainty on how the pandemic will develop and its continuing threat, it has been decided to hold the Symposium as a full virtual meeting on 11-12… Read more

Building on the collaboration with ESO and SIOPE, ERN PaedCan has started developing a webinar series to be launched in 2021 – “Most challenging paediatric oncology cases”.nnAn interactive webinar will be held monthly in 2021 to discuss difficult clinical cases. A young oncologist will present the case, followed by a live discussion with an invited… Read more

Within the EJP-RD framework, the second Research Mobility Fellowship call has been opened on 1 October.nnAim:nnThe call for Research Mobility Fellowships aims to financially support PhD students and medical doctors in training working in ERN-member institutions or an ERN affiliated partner to undertake short scientific visits (secondments) fostering specialist research training outside their countries of… Read more

Dear colleagues, experts and managers involved in the Covid19 Management Support System and ERNs community,nnWe would like to inform you that the Commission in its aim to support the EU healthcare systems and clinicians at the front line dealing with the COVID-19 pandemic, is funding a programme of training of healthcare professionals in intensive care… Read more

nnSeptember is Childhood Cancer Awareness Month: A time to recognise the children and adolescents affected by cancer at global and European scale. During September, and throughout the year, we honour the children and young people battling cancer, the families who care for them, the healthcare professionals and their caregivers, the survivors, the children who lost their… Read more

n ERN RD Training and Support Program aims to fill the gap in the available educational offer on rare diseases research by creating and implementing a comprehensive and cohesive training program for different target groups such as researchers and young clinicians working at institutions that are Full members or Affiliated partners of the European Reference… Read more

We would like to share some information with you concerning a global registry for children with cancer with COVID-19 infection.nnThe initiative has been developed with the active involvement of Guillermo Luis Chantada under the leadership of Carlos Rodriguez-Galindo in association with the International Society of Paediatric Oncology (SIOP).nnPlease find details about accessing the registry below:nnGlobal… Read more

A novel Web Conferencing Support System for the clinical management of COVID-19 patients (COVID19-CMSS) will support all EU hospitals treating complex COVID-19 cases.nnBased on the European Reference Network System, the system allows easy communication among clinicians across the EU and EEA and focuses exclusively on the support of clinicians in their daily practice. Hundreds of… Read more

The European Commission published a press release on the cross-border treatment of patients and deployment of medical staff during the COVID-19 pandemic.nn”The coronavirus pandemic is putting healthcare systems across the EU under unprecedented and increasing pressure. To support and encourage cross-border healthcare cooperation between national, regional and local authorities, the Commission has today issued practical… Read more

Dear ERN PaedCan Members,nnWe would like to inform you about the consequences of the UK withdrawal from the European Union. The Withdrawal Agreement as agreed between the Parties in October 2019 will enter into force on 1 February 2020. It will have the following implications for the ERNs:nn*   UK healthcare providers can continue participating in… Read more

The candidates have now the possibility to access a platform called “SANTE ERN HCP Application Status platform” directly from the SANTE Data Collection Platform which holds their ERN application. Within the SANTE ERN HCP Application Status platform the applicants will be able to follow the status of their application and to provide additional elements whenever… Read more

Save the date for the 5th ERN PaedCan General Assembly on 13-14.02.2020 in Brussels, Belgium!nnnnMembers of the PARTNER project and the EXPeRT Group will meet on 11-12.02.2020, before the General Assembly.nnYou can browse the pictures here. Read more

The call for membership to existing ERNs has been launched, and will be open until 30.11.2019.nnThe EC has set up a dedicated website for the information about the call, designation and the application process.nnPlease visit the website and get into contact with your board of member states representative to start preparing for the call!nnYou may… Read more

nn Filmed by touchoncology in partnership with the European CanCer Organisation at the ECCO 2019 European Cancer Summit in Brussels, Belgium.nnClick here to open the full article.nn Read more

We are delighted to inform of the nomination of Prof. Ruth Ladenstein, CCRI Austria, ERN PaedCan Coordinator and SIOP Europe Board Member, to the Mission Board for Cancer, which will support the European Commission in the development of a brand new initiative focusing on optimizing cancer research under the EU 9th Framework Programme for Research and Innovation… Read more

n We are pleased to announce that the 4th ERN PaedCan General Assembly will take place on 17-18 October 2019 in Brussels, Belgium. nThursday 17 October 2019nn10h00 – 18h30: ERN PaedCan GAnn7h30 – 22h00: Networking DinnernnFriday 18 October 2019nn9h00 – 16h00:  ERN PaedCan GAnnFINAL PROGRAMME. nnRegistration form: deadline by 16 September (please note that registration is… Read more

nnWe are pleased to announce that the 3rd ERN PaedCan General Assembly will place on 31.01-01.02.2019 in Brussels, Belgium.nnOpen the Final Agenda.nnIf you require more information, please send us an email to: office@siope.eu Read more

Around 80 participants took part in the ERN PaedCan General Assembly on 25 September in Brussels.  Various stakeholders provided an update, details on the implementation plan, project performance quality indicators, and the deliverables for Year 2. Participants were engaged in interactive discussions.nnAn update of the ERNs key achievements to date was provided and included the… Read more

The European Reference Networks are featured in the Commission’s EU Protects campaign which aims to raise awareness of the ways in which the EU combats global challenges to protect its citizens.nnThe European reference Networks are one of the example of how a strong and efficient European collaboration can make a difference in the life of… Read more

The development and future of the European Network against Childhood Cancer (ERN PaedCan) was the focus of an expert discussion with the EU Commissioner for Health and Food Safety, Vytenis Andriukaitis, people directly affected by childhood cancer, and medical experts.  The discussion focused on successes and hurdles on the way to improved medical care for… Read more

nn nnSeptember is Childhood Cancer Awareness Month, and is symbolised by a gold ribbon, worn to commemorate the event.nnUnfortunately, cancer remains the leading cause of death from disease among children in Europe.nnPlease join the conversation on social media to raise awareness about #ChildhoodCancer and #ERNsnn  Read more

Our eLearning program for Paediatric Oncologists has just been expanded by our Retinoblastoma Webinar, which has been just released and can be accessed online. nThe webinar is held by esteemed colleague François Doz, Professor of Paediatrics at the University Paris Descartes, paediatric oncologist, deputy director for clinical research and training in the Institute Curie’s SIREDO… Read more

n We are pleased to announce that the second ERN PaedCan General Assembly will take place on 25 September in Brussels, Belgium. n nnShort summary of the previous ERN PaedCan meeting:nnThe objectives of the ERN Paedcan General Assembly (1-2 February 2018 in Brussels) were successfully achieved.  Participants achieved a clear understanding of the ERN PaedCan, gained… Read more

nnWe are pleased to announce that the ERN PaedCan General Assembly took place on 1-2 February 2018 in Brussels, Belgium.nnClick here to download the programme. Read more

To discuss the final outcomes of this multiannual project, you are all kindly invited to attend the ERN PaedCan official kick-off meeting next 29-30 June 2017 at the Renaissance Hotel in Brussels, Belgium.nnStarting on 29 June with a meeting of the SIOPE Clinical Research Council for paediatric and adolescent oncology (SIOPE CRC), the following day… Read more

During the ERN Conference in Vilnius last 9-10 March 2017, the European Reference Network for paediatric oncology (ERN PaedCan) has been officially approved. This incredible result has been achievable thanks to the great team effort and the strong commitment of all ExPO-r-Net partners, who managed to consolidate the preconditions for this multinational network.nnIn concrete words,… Read more

This is a placeholder for the Newsletter plugin images. You may edit and reuse this post but do not remove it. Read more

Click here to access the ERN PaedCan Newsletter from Novemver 2017 Read more