A collaborative conference on Smith-Lemli-Opitz syndrome in Gothenburg brings together families and medical professionals with both onsite and online access.
Swedish SLOS Conference – October 2, 2023 Read More »
From 6 to 7 July 2023, the MetabERN centre Sant Joan de Déu Hospital in Barcelona will host the Workshop: “Brain Metabolism Workshop: from rare diseases to common biological pathways”. This will be an excellent occasion for patients, clinicians, and researchers for sharing knowledge and new ideas on brain metabolism as a transversal approach for
Brain Metabolism Workshop – 6-7 July 2023 Read More »
Registration is now open for the “Genetic therapies” course promoted by Recordati Rare Disease Fondation d’Entreprise, which will be held in person from 22 to 24 June 2023, in Heidelberg (Germany). The course will provide valuable insights into the rapidly evolving field of genetic therapies and their application in rare diseases, mainly inherited metabolic diseases.
“Genetic therapies” course in Heidelberg – 22-24 June Read More »
We are delighted to announce the Cross ERN Workshop (MetabERN – ERN TransplantChild – ERN RARE-LIVER) which will be held in Coimbra, Portugal on 8 to 9 June 2023. The workshop is aimed at paediatric, adult physicians, patient associations and patient advocacy organizations from three European Reference Networks and is supported by the EJP RD Support scheme for Networking
Liver Transplant for Inborn Errors of Metabolism – Sharing Knowledge Across ERNs Read More »
Global experts and families gather in Portugal to discuss advances in Congenital Disorders of Glycosylation treatment and care.
6th World Conference on CDG – 21-23 July 2023 Read More »
Amsterdam UMC hosts a hybrid symposium on gyrate atrophy, bringing together experts and families for research updates and discussion.
Gyrate Atrophy of the Choroid and Retina – International hybrid symposium Read More »
Young healthcare professionals can enhance their knowledge of rare metabolic diseases at this interactive course in Nierstein, Germany.
Postgraduate Course on Lysosomal Storage Disorders in Nierstein Read More »
The Italian Anderson-Fabry Association commissioned a survey by C.R.E.A. Sanità in 2018 to evaluate various socio-economic aspects affecting the families and patients living with Fabry disease, such as the quality of life, methods of treatment, support from the National Health Service, and the costs related to the treatment of the disease. 106 patients with a confirmed diagnosis
EVALUATING THE DIRECT AND INDIRECT COSTS OF FABRY DISEASE IN ITALY Read More »
Padua University hosts a scientific workshop exploring blood-brain barrier research and novel therapeutic strategies in rare diseases.
A new research project explores Smith-Lemli-Opitz syndrome’s lifelong impact, inviting European families to share their experiences.
Patient representatives for Smith-Lemli-Opitz syndrome are looking for European families Read More »
Leading experts publish a position paper highlighting the urgent need for improved rare disease education across European healthcare.
Rare disease education in Europe – read the new publication Read More »
Two key events under the Czech EU Presidency address newborn screening and policy framework development for rare disease management.
Rare Diseases events under the Czech EU Council Presidency Read More »
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