A networking event, funded by EJP RD’s Networking Support Scheme, is being organised in Madrid, Spain on March 23rd-24th. This unprecedented event for the CTNNB1 community aims to bring together healthcare professionals, industry, families, and patient advocacy organizations working together to raise awareness, accelerate the development of effective treatments and improve the lives of those…
This symposium on inherited arrhythmias is funded by the EJP-RD Networking Support Scheme and will take place in Amsterdam in March 2023. Registration and more information here. The meeting will include talks on cutting edge research from some of the world’s leading investigators in this field. It will also include discussions on developing the new…
A funded networking event, the first Argonaute Syndrome Science & Family conference, is being organized to bring together patient families, researchers and clinicians of the AGO1 and AGO2 communities to facilitate the sharing of knowledge. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity. The event will be held…
A funded networking event « Taking congenital portosystemic shunts (CPSS) to the next level – 2nd meeting of experts » is being organised to improve patient care by addressing controversies in CPSS management focusing on liver nodules, portopulmonary hypertension (POPH), endocrine abnormalities, and the challenges of recommending shunt closure. This event has received funding support from the…
A funded networking event « European meeting on Phelan-McDermid syndrome » is being organised to discuss the guideline recommendations and to strengthen the collaboration that was started in 2020 by the European consortium on Phelan-McDermid syndrome (PMS) and supported by ERN-ITHACA, in order to tackle the knowledge gaps that they identified, as well as to discuss how best to…
A funded networking event « 2nd International Congress on Biliary Atresia and Related Diseases (BARD) » is being organised to offer access to the latest research and analysis related to this family of rare diseases. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the second round of funding…
A funded networking event “3rd International Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome (WAS2022)” is being organised to offer access to the latest research and analysis related to this rare disease. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the first round of funding…
A funded networking event “Treat AIE: First European networking conference to provide guidelines and improve treatment of Autoimmune Encephalitis” is being organised to foster collaboration and improve the future of Autoimmune Encephalitis (AIE). This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the third round of funding…
A funded networking event “European Forum on Visceral Myopathy 2022” is being organised in Camogli, Italy. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity. The in-person event will take place over three days from April 27th – 29th. Special interest will be devoted to clinical diagnosis and patient management, genetics and onset molecular…
A funded networking event « International Vasculitis Patient Conference » is being organised as a satellite hybrid event to the 20th International ANCA Vasculitis Workshop 2022. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the sixth round of funding in September 2021. The hybrid event will take place over two days from…