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ERN eUROGEN Newsletter - October 2020
Dear All,

Unfortunately, it seems COVID-19 cases are rising again across Europe, so we hope you and your loved ones are staying safe and well.  We would like to remind you about the COVID-19 recommendations and resources available on our website.  

In this edition of the newsletter, you can find updates on our webinar programme, current activities, Affiliated Partners and new members, and interactions with other organisations. 

Please do keep in touch with us via email or social media, we love having your feedback and comments. 

Best wishes,
The ERN eUROGEN Coordination Team
ERN eUROGEN - We Need Your Data! 

It's that time of year again!  The EC opened the IT portal for ERN Data Collection on 1 October with a deadline of 31 October. 

We now need our members to send Darren Shilhan, ERN eUROGEN Lead IT and Data Performance Analyst, their patient and procedure numbers by 23 October in order to allow time for him to collate, check and upload it. 

Please return the information on time and let him know as soon as possible if you anticipate any problems.  

ERN Monitoring, Indicators, Data Collection & Analysis
The ERN Monitoring Working Group with DG SANTE hosted a lively Webex meeting on 24 September to discuss the indicators and all aspects of the data collection and IT portal.  The aim was to discuss all the issues and ensure clarity regarding the data to be collected. The EC very clearly emphasised that future financing and sustainability of the ERNs will be linked to the monitoring system.

This round of data collection will be particularly interesting in trying to understand the impact of COVID-19.  The results of the analysis will be shared with the ERN Coordinators Group and the representatives of the Board of Member States for ERNs during meetings at the end of November.  Excitingly, the validated results can then be made public! 

This will be the first attempt to collect data on this scale at European level, with incredible potential for future improvements to patient care and research.  

ERN eUROGEN Monthly Webinars: October & November
We're very much looking forward to the next two webinars in our educational series - please do join the sessions and invite any colleagues you think would be interested!

Tuesday 20 October 1800-1900 CET
Newborn Management of Anorectal Malformation (ARM) in Male Patients 
Prof. Paola Midrio (Cà Foncello Hospital, Treviso, Italy)
Prof. Ivo de Blaauw (Radboudumc, Nijmegen, the Netherlands)
Click here for information about the webinar and free registration

Tuesday 3 November 1800-1900 CET
Intermittent (Self-)Catheterisation in Children: Teaching, Guidance and Follow-Up Care by Nurse Specialists & Urotherapists
Hanny Cobussen-Boekhorst (Radboudumc, Nijmegen, the Netherlands)
Click here for information about the webinar and free registration

Update on ERN eUROGEN Activities
We last gave a thorough update on our activities at our annual Strategic Board Meeting held virtually in June, so felt it was time to give all interested parties an update on our current status, activities and future plans. 

The full report is available through our website, covering enlargement of the ERNs, funding, patient care, guidelines, registries, education & training, research, monitoring & data collection, collaboration, and communication & dissemination. 

We hope that you will find this an informative overview.  
ERN eUROGEN COVID-19 Webinar with the EAU & EC

Together with the European Association of Urology, ERN eUROGEN ran a webinar on Thursday 3 September on COVID-19 and urology.

A recording of this is now available on the EC website and features presentations from the prominent urologists Jens Rassweiler, Chris Harding, Maria Ribal, Frank van der Aa and Salvador Arlandis.  The presentations can also be downloaded individually

The webinar was part of a series of events dedicated to the management of patients suffering from COVID-19 and rare and complex diseases or conditions. The webinars are organised by DG SANTE and the European Reference Networks system (ERNs).

Affiliated Partners now Formally Included in ERNs

The inclusion within the ERN community of the Affiliated Partners (both Associated National Centers and National Coordination Hubs) was finalized on 31 August: 16 centres from 8 countries are now part of ERN eUROGEN.

Their expertise will support all the network’s activities and will facilitate the sharing of knowledge across the EU. Affiliated Partners will be ERN entry points as they improve the accessibility across the EU for patients living in their country.

Conflicts of Interest & Disclosures in the ERNs
The ERN Working Group on Legal & Ethical issues and relations with Stakeholders (ERN LES WG) has developed and now finalised two documents relating to conflicts of interests and disclosures in the ERNs.  

Both of these documents are available through the ERN eUROGEN website:

Share4Rare: Connecting Rare Disease Patients

Michelle Battye, ERN eUROGEN Centre Manager, attended a webinar (recording available online) organized by Share4Rare to introduce their European project to the ERN teams. 

Share4Rare aims to serve and help the rare diseases patients and caregivers: by using artificial intelligence algorithms they are able to foster global connections between their platform's users according to their specific conditions.

The community is open to any adult patients, caregivers of paediatric patients with any rare disease, as well as patient representatives and patient organizations.

EC Training for COVID-19 Frontline Clinicians
The EC is funding a programme of training of healthcare professionals in intensive care skills to support frontline clinicians dealing with COVID-19. 
Training is free of charge and available for every doctor and nurse working in a hospital with an Intensive Care Unit, in all 27 EU Member States and the UK.

Click here for more information and for registration. There is also a dedicated EC webpage for actions relating to the ERNs and Covid-19.
H-CARE Pilot Survey: Overall Results
The results of the H-CARE survey (carried out by EURORDIS) show that at European level, access to the expertise of ERN healthcare providers is very beneficial for rare disease patients’ healthcare experience and for their access to diagnosis

The 6-page factsheet presenting the results for eUROGEN and results on survey design is available through our website. A factsheet presenting those results in 23 languages will be available by the end of October.

Rare 2030 Workshops on Rare Disease Policy
Rare 2030 is a foresight study gathering the input of patients, practitioners and key opinion leaders to propose and recommend policy improvements leading to a better future for people living with a rare diseases and complex conditions in Europe. At the end of 2020, the two-year project will culminate with a presentation to the European Parliament, with recommendations on the most critical areas needing sound policy.

ERN eUROGEN (represented by Wout Feitz, Michelle Battye and Dalia Aminoff) was actively involved in the ERN-specific Rare 2030 workshops on 28-29 October. The EC was also represented in the workshops and the importance of the ERNs as a driver of quicker diagnoses through knowledge sharing and the huge potential impact of the ERN registries and research were discussed. 

EJP RD Call for ERN Research Mobility Fellowships

The European Joint Program on Rare Diseases (EJP RD) opened a second call for ERN research mobility fellowships on 1 October. 

PhD students and medical doctors in training from ERN member and Affiliated Partner institutions can apply for funding of short-term (1 to 3 months) training visits at another ERN center outside their country of residence.

Please let us know if you would like any assistance with an application.  

Assessment of New ERN Applicants In Progress
As noted last month, the assessment process following the call for new members to apply to the existing European Reference Networks (suspended in April this year due to the COVID-19 pandemic) reopened on 1 September.

The eUROGEN Coordination Team has been collating the results of the assessments and sending these out for approval from existing full members. Final decisions can then be uploaded to the online portal set up by the ERN Office in the European Commission, for independent assessment and, eventually, ratification.   

We look forward to welcoming our new members around the end of the first quarter of 2021.

Upcoming Events
(All subject to change depending on developments in the COVID-19 pandemic)