RARE DISEASES: Inherited NeuRoMetabolic Diseases Information Network (InNerMeD-INetwork) promoted by Brains For Brains Foundation selected for funding under the 2012 work plan of the Second EU Health Programme
The Directorate-General for Health & Consumers(DG SANCO) has approved the project “Inherited NeuRoMetabolic Diseases INFORMATION NETWORK” (InNerMeD-I-network) of which the Brains for Brain Foundation is the main leader partner.
NeuroMetabolic Disorders (NMDs) are a group of rare paediatric genetic metabolic disorders that impact on the brain causing mental retardation and progressive neurodegeneration that, if not promptly treated, ends in early death. Lack of awareness of these conditions can lead to delayed diagnosis and start of treatment, with consequent tragic results.
Increasing awareness is therefore the first crucial step in fighting these conditions. InNerMeD-I-network wants to create a network of information targeted on diagnosis and treatment of NMDs based on the collection and exchange of proper information among scientific community, health professionals, patients, patients association and all interested stakeholder.
The project aims to increase current knowledge on NMDs and speed up the timely and precise identification of patients to which apply the available treatments.
The network will also favour biomedical research, straightening research capacities and fostering innovative therapeutic tools derived from the recent scientific advancements based on biomarkers use and personalised approaches.
Brains for Brain Foundation, coordinator and main leader partner, will particularly assure the partners coherence and capacity to share decisions and to put together relevant knowledge and research capacity.
The partnership also includes both public and private international clinical centres: Gianni Benzi Foundation (FGB) – (Italy) Region Hovedstaden (RH) – (Denmark) Children’s Hospital, Sveu?ilište u Zagrebu Medicinski fakultet (UZSM) – (Croatia) Hospital Sant Joan de Déu (HSJD)-(Spain) Thanks to partners specific expertise InNerMeD-I networking will create a formidable concentration of competences in such a complex, heterogeneous and niche therapeutic area
Web site www.innermed.eu