TREAT-NMD DMD Early Diagnosis Training Seminar
A free online seminar for paediatricians on early DMD diagnosis will launch in Spring 2022. Take the survey and register interest.
TREAT-NMD DMD Early Diagnosis Training Seminar Read More »
The first survey to reflect on the social and medical needs of rare metabolic patients and families in Europe
A MetabERN survey highlights the social and medical challenges faced by IMD patients and caregivers across 25 European countries.
17th International Symposium of the SPDM | 8-10 September
The 17th International Symposium of the Portuguese Society for Metabolic Disorders (SPDM), will take place the 9th-10th of September 2021.
17th International Symposium of the SPDM | 8-10 September Read More »
4th International Conference on Pediatric Liver Disease
The 4th International Conference On Pediatric Liver Disease, with specific discussions on liver transplantation in metabolic diseases.
4th International Conference on Pediatric Liver Disease Read More »
IEMbase mobile app version 1.0 is live
The IEMbase announced the creation of the IEMbase mobile app version 1.0, which is now available for Android and Apple devices.
IEMbase mobile app version 1.0 is live Read More »
10 Principles for Greater Patient Empowerment
Weber Shandwick, in collaboration with EU patient groups, trade associations and policy-makers has produced a set of 10 principles and actions.
10 Principles for Greater Patient Empowerment Read More »
‘Un Amico Raro’ – An animated cartoon to explain the Anderson-Fabry disease
‘Un Amico Raro’, the special episode of the animated tv series “Leo da Vinci” broadcast on Rai Ragazzi, depicts the story of a young kid living in the 16th century suffering from Anderson-Fabry disease.
‘Un Amico Raro’ – An animated cartoon to explain the Anderson-Fabry disease Read More »
ERN Research Mobility Fellowship | 15 March 2021
EJP RD pre-announced the upcoming opening of the call for Research Mobility Fellowships on the 15th of March, which aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
ERN Research Mobility Fellowship | 15 March 2021 Read More »
International Scientific CDG Symposium 2021 (Virtual)
A virtual symposium on Congenital Disorders of Glycosylation (CDG) will be held on 23-24 June 2021. Abstract submission is open.
International Scientific CDG Symposium 2021 (Virtual) Read More »
Rare Disease Day Verona | Weekend Programme
Rare Disease Day Verona | A weekend programme, planned by AISMME, starting with a webinar on February 26th at 17:30 to 19:00.
Rare Disease Day Verona | Weekend Programme Read More »
Information Webinar | February 2nd, 2021
An EJP RD webinar on 2 Feb 2021 will present the Joint Transnational Call on rare disease research. Registration closes 29 Jan.
Information Webinar | February 2nd, 2021 Read More »
EJPRD Policy Meeting | 12 – 13 January 2021
The objective of the EJPRD policy meeting is to kick off the discussion on the future Rare Diseases Partnership under Horizon Europe (HE).
EJPRD Policy Meeting | 12 – 13 January 2021 Read More »
