irdirc leaflet fv · 2020. 3. 23. · @irdirc [email protected] getin touch vision...
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@IRDiRC
www.irdirc.org
Get in touch
VisionEnable all people living with a rare disease to receive anaccurate diagnosis, care, and available therapy withinone year of coming to medical attention
International level co-operation to stimulate, better coordinate and maximize output of rare disease research efforts around the world
Goal: Promote the use of research resources already available and adopted by the rare diseases research communityResources: Evaluated via a peer-reviewed process by IRDiRC Scientific Committees and experts in the fieldApplications: Accepted on a rolling basisMore information can be found at: http://www.irdirc.org/research/irdirc-recognized-resources/
A public label and
quality indicator to designate resources
(platforms, tools,
standards, and guidelines) of fundamental
importance to the international RD
research community.
58 members from21 different countries
Funding organizations and companies invest more than $10
mln in 5 years in research projectsPatient organizations represent the
broad patients’ interests for all rare diseases
Develop the means to diagnose patients with suspected rare diseaseswithin one year of coming to medical attentionDevelop 1,000 new therapies for rare diseases, and particularly fordiseases with no approved treatmentCreate methods for assessing the impact of diagnoses and therapies onrare disease patients
Orphan Drug DevelopmentGuidebook
Patient Engagement in Research
Model Consent ClausesFor Rare Disease Research
Small PopulationClinical Trials
Patient-CenteredOutcome Measures
Automatable Discoveryand Access
Matchmaker Exchange
Privacy-PreservingRecord Linkage
Data Mining andRepurposing
2015 2016 2017 2018 2019
Solving the Unsolved
S2 S1 S2 S1 S2 S1 S2 S1 S2
Indigenous Population
Clinical ResearchNetworks
Task Forces are created to tackle specific time-limited topics within rare diseases research proposed by the Consortium’s Constituent and/or Scientific CommitteesTask Forces develop solutions through policy recommendations and/or technical applications including platforms, tools, standards and guidelines
IRDiRC recruits experts and key players throughout the world to populateits Scientific Committees and Task Forces.The Task Forces may operate either solely as IRDiRC initiatives or jointlywith partner groups that wish to collaborate and address similar issues.
Companies Funders
Patient Advocates
Interdisciplinary
Diagnostic Therapies
Members
IRDiRC goals by 2027IRDiRC organizes several activities and provides many resources
to the international rare diseases research community
IRDiRC activities & resources
Members have balancedexpertises and represent
academia, patient organizations, diagnostics, pharmaceutical
industry, and regulatory bodies
Constituent Committees Scientific Committees
Task Forces Working
Groups
Publications
Conferences &
Workshops
Meeting ReportsGene
Counter
Orphan Drug
Counter
State of Play
Policies & Guidelines
Recognized Resources
IRDiRC Task Forces