Collaborations
Orphanet
Orphanet is a database offering a comprehensive and freely accessible repertory of information on rare diseases and orphan drugs. Orphanet is led by a consortium of around 40 countries, coordinated by the Institut national de la santé et de la recherche médicale (France).
RARE-Bestpractices and Orphanet have signed a statement of collaboration. They have agreed to collaborate towards the shared goal of promoting and advancing knowledge on rare diseases.
The collaboration between RARE-Bestpractices and Orphanet involves
o the utilisation of the Orphanet nomenclature of RD for use in the RARE-Bestpractices databases RAREGUIDELINE and RAREGAP in accordance with terms to be defined with Orphanet
o the creation of links between Orphanet portal and RAREGUIDELINE and RAREGAP
o the recognition of each other on the respective web sites
o the dissemination of news of each other’s events and activities
o the contribution to workshops, meetings, symposia of each other when appropriate
the identification of further areas of interaction
E-RARE ERA-Net for Research Programmes on Rare Diseases
E-Rare, Horizon 2020 ERA-Net Cofund (2014-2019), is a consortium bringing together responsible funding organisations and ministries to provide an international model platform for implementing Joint Transnational Calls on rare diseases. RARE-BEstpractices and E-RARE have signed a statement of collaboration.
RARE-Bestpractices and E-Rare have agreed to collaborate towards the shared goal of promoting and advancing knowledge on rare diseases.
The collaboration between RARE-Bestpractices and E-Rare involves:
o the utilisation of the RARE-Bestpractices research recommendation database "RAREGAP" for the E-RARE open calls when appropriate
o the recognition of each other on the respective web sites
o the dissemination of news of each other’s events and activities
o the contribution to workshops, meetings, symposia of each other when appropriate and the iddentification of further areas of interaction
Patient Advisory Council (PAC)
EURORDIS has established the RARE-Bestpractices “Patient Advisory Council” (PAC) involving volunteer patient representatives to advise on the RARE-Bestpractices project activities and guaranteeing a patient-centric approach throughout the project operation.
RD-Connect
“RD-Connect is a unique global infrastructure project that links up databases, registries, biobanks and clinical bioinformatics data used in rare disease research into a central resource for researchers worldwide.
In a six-year project funded by the European Union but uniting researchers across the world, it will develop an integrated research platform in which complete clinical profiles are combined with -omics data and sample availability for rare disease research, in particular research funded under the International Rare Diseases Research Consortium - IRDiRC.”(from: http://rd-connect.eu/about/)
The Murdoch Childrens Research Institute (MCRI) (Australia)
The Murdoch Childrens Research Institute (MCRI) is an independent, not-for-profit medical research institute registered as a company limited by guarantee. A constitution sets out the power and duties of the company, the board and MCRI Director (Professor Kathryn North).
The MCRI is a global contributor in child and adolescent health. The vision of the MCRI is to be the place to be to change the face of child health research. The main source of funding directly to support research is government via a competitive peer review process. Other sources of funding include infrastructure funding from both federal and state governments, and philanthropy
The MCRI is organised into 5 research themes: Population Health, Clinical Sciences, Immunity and Infection, Genetics and Cell Biology. Areas of focus include adolescents, allergy and autoimmune conditions, brain and mind, cancer, genetic disorders and obesity.