ERN ReCONNET

ERN ReCONNET will organize its 2nd International Congress that will be held on April 9th - 11th, 2025 in the stunning Prague (Czech Republic). Save the date and join us for this unique event where knowledge, awareness and a patient-centred approach will be at the cornerstones of our event as it has been been since the beginning of the ERN ReCONNET activity more than five years ago. The program reflects the ERN mission as it covers important topics in the diagnosis and management of rare and complex diseases such epidemiology, diagnosis and clinical management, biobanking and registries, quality. The program has been developed to integrate the perspective of different stakeholders involved in rare diseases management. For this reason we expect that the congress will be of interest not only for specialists but also for people living with a rare disease, caregivers, clinicians, policy makers, industry, and will represent an opportunity for rare and complex connective tissue diseases community to meet, work together and find new inspirations for research, diagnosis and therapy. Registration is OPEN and special fees are available. Abstract submission is also open, the deadline is Nov. 25th! We look forward to welcoming you all in Prague! Check the link for all info and details: bit.ly/3Rdb3Xf

Season's Greetings from the whole ERN ReCONNET! With the year 2024 ending soon, we would like to thank you all for the amazing contributions that you all are bringing to ERN ReCONNET and to the whole rCTDs community. Over this year, many results were achieved by ERN ReCONNET: we have published the Red Flags on IgG4, the RarERN Path organisational model for systemic sclerosis, we have worked very hard on developing webinars, courses, data sets for our TogethERN ReCONNET registry, as well as new studies and even new methodologies to be used in our ERN, among many other numerous and high-quality activities being implemented in our Network. The year 2025 will bring new exciting initiatives, such as the 2nd ERN ReCONNET Scientific Congress in Prague, the launch of the new CPMS 2.0, of the new National Hubs and of the implementation of the TogethERN ReCONNET registry in our centres as well as a new opportunity for you all to contribute to the new ERN ReCONNET Strategic Board, that will replace the current Steering Committee. Stay tuned! Happy Holidays and Happy New Year from ERN ReCONNET #ERNs #rarediseases #europeanreferencenetworks #ERNReCONNET

Season's Greetings from the whole ERN ReCONNET! With the year 2024 ending soon, we would like to thank you all for the amazing contributions that you all are bringing to ERN ReCONNET and to the whole rCTDs community. Over this year, many results were achieved by ERN ReCONNET: we have published the Red Flags on IgG4, the RarERN Path organisational model for systemic sclerosis, we have worked very hard on developing webinars, courses, data sets for our TogethERN ReCONNET registry, as well as new studies and even new methodologies to be used in our ERN, among many other numerous and high-quality activities being implemented in our Network. The year 2025 will bring new exciting initiatives, such as the 2nd ERN ReCONNET Scientific Congress in Prague, the launch of the new CPMS 2.0, of the new National Hubs and of the implementation of the TogethERN ReCONNET registry in our centres as well as a new opportunity for you all to contribute to the new ERN ReCONNET Strategic Board, that will replace the current Steering Committee. Stay tuned! Happy Holidays and Happy New Year from ERN ReCONNET #ERNs #rarediseases #europeanreferencenetworks #ERNReCONNET

Did you know that the ERNs are evaluated every 5 years? The European Commission has published the report of the first evaluation of the ERNs and the results will be presented in a webinar tomorrow! European Reference Network evaluation: the way forward 🗓️ 4th December 2024 ⏰ 10-11 CET ✍🏻 Register now for the webinar at this link: https://lnkd.in/dZjzQaMa More info here: https://lnkd.in/dbahGsCp

Submit your abstract now for the 2nd ERN ReCONNET Scientific Congress! Today is the last date available to submit your abstract, don't waste this great opportunity, click here to submit your abstract: https://lnkd.in/dqC_pqsf The 2⃣nd International Congress will take place on April 9th - 11th, 2025 in Prague (Czech Republic). 💡 Knowledge, awareness, and a patient-centred approach have been cornerstones of the activity of #ERNReCONNET in its first five years of activity and the program reflects the ERN mission, covering important topics in the diagnosis and management of rare and complex diseases such as epidemiology, diagnosis and clinical management, biobanking and registries, quality. ⚙️ The program has been developed to integrate the perspective of the different stakeholders involved in #rarediseases management. For this reason, we expect that the congress will be of interest not only to specialists but also to people living with a rare disease, caregivers, clinicians, policymakers, industry, and will represent an opportunity for rare and complex connective tissue diseases community to meet, work together and find new inspirations for research, diagnosis and therapy. ⭐ Registration is OPEN and special fees are available, check if you can apply to those. 🫶 Don't miss it, check the link for all info and details. Join us in Prague! 🔗bit.ly/3Rdb3Xf #europeanreferencenetwork #diagnosis #guidelines #goodsharingpractice #SystemicSclerosis #Lupus #RelapsingPolychondritis #EhlersDanlosSyndromes #health #experts #scicomm #SystemicLupusErythematous #patient #erns #Antiphospholipidsyndrome #rarediseasecommunity #SjogrenSyndrome #IdiopathicInflammatoryMyopathies #idiopathicinflammatorymyopathies #IgG4RelatedDiseases #MixedConnectiveTissueDiseases #SystemicSclerosis #UndifferentiatedConnectiveTissueDiseases

Hélène Dollfuss, Coordinator of ERN-EYE talked at the conference "For an EU commitment to tackling rare diseases" about ERN Registries and the Clinical Patient Management System, describing the main lessons learned by the ERNs over the years. Watch the live webstream here: https://bit.ly/RDBudapest

Today Luca Sangiorgi, ERN BOND European Reference Network Coordinator and Chair of the ERNs Coordinators Group, presented success stories from different ERNs during the conference "For an EU commitment to tackling rare diseases" taking place in Budapest - watch the live webstream here: https://bit.ly/RDBudapest

Today Luca Sangiorgi, ERN BOND European Reference Network Coordinator and Chair of the ERNs Coordinators Group, presented success stories from different ERNs during the conference "For an EU commitment to tackling rare diseases" taking place in Budapest - watch the live webstream here: https://bit.ly/RDBudapest

👉🏻 Submit your abstracts now for the next ERN ReCONNET Scientific Congress taking place in Prague from 9th to 11th April 2025! ⏰ The deadline for the abstract submission is now extended until the 1st of December! 👩💻Make sure to contribute to the congress, submit your abstract now at this link 👇🏻 https://lnkd.in/dqC_pqsf

Yesterday was a blast at the 2024 ACR Annual Convergence! We met so many colleagues and friends at the ERN ReCONNET booth and at the special event event organised at the Networking lounge to discuss the new CPMS 2.0. Make sure to step by booth 2101 to meet the Team and take a picture together 💪🏻