We would like to bring to your attention a highly interesting course that will take place in March 2015 in Manchester, UK. The topic of the Advanced metabolic course is Controversies in management.
For more information click HERE
E-HOD has achieved all milestones and deliverables for this first period. The project is innovative as it adds value to the reflection on EU Reference Networks and registries clustering 15 RD onto an existing network and registry (E-IMD) of 11 intoxication type diseases (E-IMD is funded by the EC EAHC 2010 12 01). It also adds value to the reflection on NBS programmes. Following the EMA/EUCERD discussions on the need to develop a unique source of data by disease, E-HOD leads the way in building a registry, with improved sustainability, for researchers, regulators, payers and for orphan drug follow-up through a strategy to develop public/private partnerships. Given the particularly low number of patients and the complexity of the diseases, no national or regional project in Europe would be able to perform this work.
Ms. Dana Hunt wrote a blog about patient´s experience with diagnosis, treatment and daily living with homocystinuria.
We have created a facebook page of the E-HOD project. You are invited to "like us", follow the newest information about the progress of the project and share them with your friends.
E-HOD has been funded by the European Commission through its Public Health and Consumer Protection Directorate (DG SANCO), PHEA programme (more information)