Report: The 1st Argonaute Syndromes Science & Family Conference establishes exciting new collaborations

EJP RD News, Networking events funded by EJP RD

A funded networking event, the first Argonaute Syndrome Science & Family conference, has been 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. A report has been prepared to understand more about…

Kleefstra Syndrome Scientific Conference 2023

EJP RD News, Networking events funded by EJP RD

DATE & VENUE The conference will be a hybrid event (in person and online streaming).Where: Ljubljana, Slovenia, Hotel SlonWhen: 1st – 2nd June 2023 (CEST) SCOPE The Kleefstra Syndrome Scientific Conference 2023: “Moving towards the uptake and use of Artificial Intelligence (AI) in research and clinical work” focuses on Kleefstra syndrome, a rare genetic disorder with app. 1000 diagnosed patients worldwide. Due…

1st International CTNNB1 Syndrome Conference

EJP RD News, Networking events funded by EJP RD

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…

EJP RD Networking Symposium: Complex genetics of inherited arrhythmias

EJP RD News, Networking events funded by EJP RD

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…

ECRIN NSS Meeting: Identifying obstacles hindering the development of academic-sponsored trials for drug repurposing on rare-diseases

Networking events funded by EJP RD

As a continuation of the funding of an EJP RD NSS call, ECRIN is holding a two-day workshop and networking event in Prague on October 4th & 5th; the event will see the gathering of investigators involved in drug repurposing academic-sponsored trials for rare diseases, as well as other rare diseases clinical trial stakeholders. To improve the existing treatments of…

Networking Support Scheme (NSS) Event: Argonautes Syndrome Science & Family Conference

EJP RD News, Networking events funded by EJP RD

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…

Networking Support Scheme (NSS) event: Taking congenital portosystemic shunts (CPSS) to the next level

Networking events funded by EJP RD, News

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…

Networking Support Scheme (NSS) event: European meeting on Phelan-McDermid syndrome

EJP RD News, Networking events funded by EJP RD, News

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…

Networking Support Scheme (NSS) event: 2nd International Congress on Biliary Atresia and Related Diseases (BARD)

EJP RD News, Networking events funded by EJP RD, News

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…

Networking Event: Regional Cooperation: Conference on new concepts and approaches in lymphoma

EJP RD News, Networking events funded by EJP RD

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…