Questionnaire on health system resilience in the context of rare diseases

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Gelareh Emami, a PhD student at the Department of Health Management at Scuola Superiore Sant’Anna, under the supervision of Prof. Giuseppe Turchetti and Dr. Valentina Lorenzoni, is investigating health system resilience in the context of rare diseases.    She requests healthcare professionals (Medical doctors, Nurses, Physiotherapists, etc.) involved in the treatment of rare diseases to complete a questionnaire. The results…

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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…

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Expression of interest to participate in the second paediatric expert patients training workshop

EJP RD News

Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?If yes, this paediatric expert patients training workshop is…

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MOOC « Diagnosing Rare Diseases: from the Clinic to Research and back » now open continuously for enrollment

EJP RD News, News

New opportunity to follow the MOOC on Rare Diseases Diagnostics! Given the enthusiasm raised by the MOOC « Diagnosing Rare Diseases: from the Clinic to Research and back » co-developed by Foundation For Rare Diseases, ERN Ithaca and ERN Genturis in the context of European Joint Programme on Rare Diseases, we have decided to keep it open continuously for enrollment.…

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EJP RD – ERICA Workshop: Ethics and regulatory considerations for ERN Data Access Committee members

EJP RD News, ERN-Research (ERICA)

We are happy to invite you to take part in a workshop addressing “Ethics and regulatory considerations for ERN Data Access Committee members”.This workshop is jointly organised by ERICA and EJP RD and will take place online on 30th June from 10 am to 12:30 pm.It primarily aims to train the members of the ERNs Data Access Committee members…

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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…

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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…

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Networking Support Scheme (NSS) event: 3rd International Symposium on Wiskott Aldrich Syndrome (WAS2022)

EJP RD News, News

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…

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