The Romanian Foundation for Lysosomal Diseases (FRBL), founded in 1998 in Cluj-Napoca, has marked 20 years since its inception.
The Romanian Foundation for Lysosomal Diseases (FRBL), founded in 1998 in Cluj-Napoca, has marked 20 years since its inception.
A Webex aimed to reach potential new CPMS users in MetabERN.
Il progetto è rivolto esclusivamente alle Associazioni di pazienti con malattia rara della Sardegna e promuove interventi di sensibilizzazione, formazione, accompagnamento e comunicazione per favorire l’azione delle organizzazioni dei pazienti e migliorare la situazione dei malati rari nelle regioni del Sud, attraverso un processo di empowerment individuale, organizzativo e di comunità.
Patient-centered research tool to increase knowledge on immune system (dys)function among CDG children and adults - The Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.
This report gives an overview of the results of the Survey that has been sent out to MetabERN members in January 2018. The two questionnaires are dedicated to: – training, – Internship, – Opinion concerning organization of training in the field of rare metabolic diseases Attached documents
ERN-LUNG is organizing a webinar on how to set up a clinical trials network.
Early diagnosis and management of newborns and infants with inherited metabolic disorders is essential for the affected children’s outcome. However, the quick and correct recognition of specific inherited metabolic disease in neonates is a challenge for neonatologists. It may be difficult, especially in critically ill neonates, to distinguish between the primary genetically encoded metabolic disorder […]
Dear Friends, Dear Colleagues, Dear Patients, We are delighted to invite you to the 13th European Working Group on Gaucher Disease Congress (EWGGD 2019, www.ewggd.org) to be held from 4-6 July, 2019 in Clermont-Ferrand, Auvergne, France. The EWGGD congress is unique in several ways: It is the only international congress dedicated to Gaucher disease in […]
In 2019 the 26th edition of the Summer School on Pediatrics will take place in Groningen! For two weeks, medical students from countries all over the world will come to Groningen and the University Medical Center of Groningen. During this Summer School the participants are offered a varied educational program. The school combines clinics and […]
After the great success of the Cystinosis conference in Berlin in July 2018, we are delighted to announce that Cystinosis Ireland has been ratified by our colleagues in Cystinosis Network Europe to host the next conference in Dublin in July 2020! We look forward to welcoming friends and colleagues from around the world to share […]