As we approach the much-anticipated summer holiday, we couldn't be more thrilled to update you on our recent endeavors and extend our appreciation for your ongoing support.
Here are some of the exciting highlights we'd love to share with you:
🎬 We are proud to present the ERKNet introductory video to illustrate the goals of our network and its impact.
🌟 A major success has been achieved! We have reached a significant milestone: more than 20,000 patients are now enrolled in ERKReg - a testament to the collective efforts and commitment of our community.
🌐 Discover our new patients' website filled with patient-related content and translated into 22 languages!
Thanks to your continued contributions and endless support, we look forward to working with you in the second half of 2023.
Wishing you all the best,
Your ERKNet Team
ERKNet introductory video
Review 7th Annual Meeting 2023
This year we were fortunate to be able to hold our 7th Annual Conference on 10-11 May in the impressive historic location "Altes Hallenbad" in Heidelberg. We had the pleasure to welcome 110 ERKNet members from 58 centres, Affiliated partners, the majority of our ePAGs and external participants on site. In addition, many other ERKNet members attended our conference virtually from all over Europe.
With a varied programme consisting of a mix of status reports on ERKNet in general and interactive sessions, lively and exciting discussions ensued that will further advance our network.
Highlights of this year's Annual Meeting were the "Best Research Abstract session", "Working Group highlight project pitches" and the "Stump the Consultants session". Furthermore, the Working Group sessions were used to further develop existing projects and come up with new ideas.
We would like to thank you all for your motivated and dedicated participation and look forward to next year's 8th Annual Meeting.
We evaluated this year's 7th Annual Meeting with 64 participants providing feedback. Registration process was mostly smooth, but travel expense reimbursement caused displeasure. We will improve the reimbursement process for faster payments.
Participants had diverse expectations, including networking, updates on ERKNet, and information on research projects. 38% "strongly agreed" and 47% "agreed" that expectations were met.
The program featured a balanced mix of lectures and interactive sessions, satisfying 82% of attendees. 16% wanted more interactive sessions, and 9% preferred more plenary sessions. New formats like "Working group highlight project pitches" and "Best Abstract Session" were well-received.
Overall feedback on the Annual Meeting: 52.7% "very satisfied," 32.7% "satisfied," and 14.6% "okay."
With regard to the next Annual Meeting, we will keep the hybrid format and duration of 1,5 days based on your feedback.
We are in the planning process and dates and location will be announced soon.
The European Registry for Rare Kidney Diseases has reached an important milestone of 20,000 enrolled patients. The participation remains highly active and more centres have started to enroll. We would like to thank all ERKReg contributors for their dedicated efforts!
ERKReg offers now on a regular basis open ERKReg trainings and Q&A session for everyone who is new or needs a little refresher. Please find all training dates on our registration page.
Three disease-specific sub-registriesare active as a modular extension of the core Registry:
ERKNet/ESPN sub-registry for childhood-onset lupus nephritis patients (N=89)
ERKNet/ESPN sub-registry for distal renal tubular acidosis patients (N=236)
EUROCYS sub-registry for cystinuria patients (N=313)
Bartter syndrome sub-registry (N=13)
MPGN/C3G w/CompCure and escapKD for pediatric CKD patients are currently in the final programming stage
Several further sub-registries are currently being planned:
Stone disorder sub-registry
Pediatric membranous NP
ERKReg: Case-base compensation for ERKNet member centres
The EU continues to support our registry with case-based compensations. If your team is not yet receiving financial support for data entry efforts, please contact firstname.lastname@example.org for more information.
We are happy to announce that we have 3 new ePAGs in our community. During our yearly conference, we had a chance to gather more testimonials from our patient representatives. You can now find their motivations and visions on our patient website. Check it out!
Our ePAGs were hard working on creating and updating Patient Journeys for rare kidney disease. Patient Journeys are comprehensive visual representations or narratives that outline the typical experiences and challenges patients may encounter from the onset of their condition through diagnosis, treatment, and long-term management. These journeys aim to provide valuable insights to patients, caregivers, and healthcare professionals, helping them better understand and navigate the complexities of living with rare kidney diseases. You can now access all these Patient Journeys right here.
In the first half of this year, we offered 8 ERKNet webinars, which were attended by an average of 85 participants worldwide, 30% of whom were ERKucation students.
After the summer break we will start on 19 September - Guillaume Dorval from Paris will give us an update on Galloway-Mowat Syndrome. To not miss our upcoming webinars register already today.
We are pleased to announce that we have uploaded 1 new eLearning cases to our moodle platform out of a total of 26 cases. Our 287 ERKNet curriculum students have worked on more than 1000 cases so far. If you have not yet worked on any eLearning cases, please visit our ERKNet moodle platform.
More information about the curriculum can be found here. The first class (from 2021) will finalize their curriculum this year, so if you have not fulfilled your task, please bear in mind you have only 4 months left!
The registration for the 4th (2024-2026) class starts in October 2023.
On the ERKNet website under “guidelines & pathways” you can find all guidance documents that were developed by our Network, as well as those developed by our partner medical societies and endorsed by the Network Board. Please find the guideline overview here.
ERKNet/Leila Guideline App
Facilitate the day-to-day application of guideline knowledge
Informs clinicians on best practice in a compact and intuitive manner
Step-by-step decision tree for diagnostic and treatment questions
App open to all international healthcare nephrology professionals
In the last few months, we have distributed interesting surveys on behalf of our Working Groups and individual ERKNet members within our network.
We would like to draw your attention to the two ongoing projects listed below. We greatly appreciate your participation and contribution.
ERKNet Survey on patients with SLC26A1 or SLC13A1 mutations
ERKNet Survey on the prevalence of PKD2-founder variant in Europe
Please find more information and an overview of the current and completed surveys here.
If you are also interested in creating a survey and distributing it to other ERKNet members, please contact us: email@example.com
Amequis - 5 year ERN and HCP evaluation
All HCP centres who joined ERKNet have received already their results of the 5-year ERN evaluation.
For HCPs who were requested to submit an improvement plan, the Independent Evaluation Body has approved a one-month extension to the evaluation process. This extension is to facilitate clarifications and corrections in the scoring. After any necessary amendments, if an HCP still needs to provide an improvement plan, the revised deadline will be on September 1, 2023. The only exception to this deadline is for HCPs that underwent an onsite audit, in which case the deadline will be extended to September 15, 2023.
ERKNet at the ERA congress in Milan
ERKNet's strong presence at ERA2023 in Milan emphasized the importance of international collaboration and the exchange of knowledge and experiences to tackle the challenges of rare kidney diseases collectively.
Take advantage of this opportunity to nominate an extraordinary individual who has demonstrated remarkable achievements and made a significant impact within the rare disease community (you can also nominate yourself) for the upcoming EURORDIS Black Pearl Awards! The recipients of these prestigious awards will be chosen in October 2023 and honored during the official Ceremony in February 2024, commemorating Rare Disease Day.
The European Rare Disease Research Coordination and Support Action consortium (ERICA) is a Horizon project in which all 24 European Reference Networks (ERNs) take part, is to build on the strengths of the individual ERNs and create a platform that integrates the research and innovation capacities of all ERNs.
Read about EJP RD News
The European Joint Programme on Rare Diseases (EJP RD) is a programme aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease.
ERKy wishes you a delightful summer holiday!
ERKNet - The European Rare Kidney Diseases Reference Network