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 “Regional Cooperation: Conference on new concepts and approaches in lymphoma” is being organised in Belgrade, Serbia on May 27th-29th. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the 4th round of funding in March 2021. The event will bring together patients…
Familial Adult Myoclonic Epilepsy (FAME) is a rare genetic condition, characterized by the occurrence of cortical tremor, myoclonus, and generalized tonic-clonic seizures inherited in an autosomal dominant fashion. A funded networking event “1st Workshop on Familial Adult Myoclonic Epilepsy (FAME)” is being organised in Naples, Italy on May 27th-28th. This event has received funding support…
A funded networking event “The AKU Scientific Conference” is being organised. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the 1st round of funding in March 2020. The meeting will again be held in Brussels, Belgium, at the Vrije Universiteit Brussel (VUB) on Saturday 14th and Sunday…
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 « 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…