From 27th to 30th May, the city of Vienna hosted the 11th European Paediatric Neurology Society congress 2015. Prof Ljerka Cvitanovic-Sojat, from InNerMeD Croatian group attended the event presenting a poster contribution, also selected for oral communication. The contribution, titled “European network about Inherited NeuRoMetabolic Diseases (InNerMeD)” described the networking objectives and activities of the project […]
InNerMeD partners are now planning the first InNerMeD network meeting for Southeastern Europe countries. Mainly organized by the Croatian partner, the meeting will be held in Zagreb on 12-13 May 2015 and will have the aim to enlarge the InNerMeD network with contacts from this geographic area. Moreover, this event will provide a general overview of […]
In the initial phase of InNerMeD project, an informative leaflet was produced with the aim to disseminate the project objectives and potentialities to all the interested stakeholders. The leaflet describes the background of the project, providing information on inherited neurometabolic diseases (iNMDs) and the related problems, the objectives of the project, its mission and its expected […]
Every March, Brain Awareness Week (BAW) unites the efforts of partner organizations worldwide in a week-long celebration of the brain. BAW is a worldwide global campaign promoted by Dana Alliance for Brain Initiatives (Dana Foundation) and European Dana Alliance for the Brain aimed to raise public awareness about the progress and benefits of brain research. InNerMed Project is one of the […]
World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances […]
The Brains for Brain Foundation (B4B), the organisation leading the Inherited NeuroMetabolic Diseases Information Network (InNerMeD-I-Network) project, has recently organised the 9th B4B Workshop and InNerMeD-I-Network 2nd Open Conference, jointly held in Frankfurt, at the Mercure Hotel, on February 5th – 7th, 2015. This 9th edition brought together more than 80 participants. The constantly increasing number […]
On Wednesday 4 February 2015, patients affected by rare diseases and their families, together with public authorities, researchers, health professionals, industry representatives and anyone who has a genuine interest in rare diseases, celebrated the official opening of the newly established Center for Rare Diseases (CRD) in Wiesbaden (Germany). The center was established in January 2014 […]
Today marks the start of Brain Awareness Week 2015! Brain Awareness Week (BAW) is the global campaign to increase public awareness of the progress and benefits of brain research. For more information, please visit this page. InNerMeD has joined forces to raise awareness of inherited neurometabolic conditions during Brain Awareness Week!
The 28th February 2015 marks the eighth international Rare Disease Day coordinated by EURORDIS and preparations are already getting underway in many areas. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy […]
The intent of this document is to give answers to some key questions regarding the development of European Reference Networks (ERN) aiming to encourage cooperation between national health authorities to improve quality, safety and access to highly specialised healthcare. For more information, please visit this page.