Disease or Translational Resources

In this section you will have the opportunity to explore information regarding:
Patient registries,
Natural history,
Patients’ information as organizations, toolkits for patients, new-born screening programs, undiagnosed diseases programs (UDPs), EU planned cross-border treatment
Target Patient Value Profile
Databases/Tools (ODDG)
Networks
Biobanks
Biomarkers (Development, guidelines, validation, qualification, genomic, cancer, pain therapeutics)

  1. Showing 14 results for:
  2. Research and Drug Development
  3. Disease or Translational Resources
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European Patients’ Academy (EUPATI) toolbox

Published by IRDiRC

Research and Drug DevelopmentOrphan DrugPatient InformationToolkit for PatientEUPATIToolboxPatient Training

The EUPATI Academy is the only in-depth training program for patient experts so far in EU that lasts 14months.
It includes an on online training program supported with two weeks of F2F training. The Academy is still operated by EPF, providing high quality training in drug development to patient from EMEA.

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EATRIS Matchmaking for lab services

Published by n/a

EATRISIndustry collaborationcore facilitytechnology platforms

EATRIS facilitates academic collaborations with industry. It identifIes scientific & medical expertise and find the capacity to provide access to the latest technologies and core facilities from within our technology platforms.It serves as a single point of contact, provides (legal) support and acts as a negotiator to facilitate project initiation and monitor project execution when needed. Its infrastructure consists of 115+ biomedical research institutes in 14 EU countries.

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European Patients’ Academy (EUPATI) toolbox

Published by IRDiRC

Research and Drug DevelopmentOrphan DrugPatient InformationToolkit for PatientEUPATIToolboxPatient Training

The EUPATI Academy is the only in-depth training program for patient experts so far in EU that lasts 14months.
It includes an on online training program supported with two weeks of F2F training. The Academy is still operated by EPF, providing high quality training in drug development to patient from EMEA.

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Advisory Committee for Therapeutics (ACT) Toolkit

Published by Newcastle University

Research and Translational ResourceNetworkExpert AdviceClinical TrialNeuromuscular

The TREAT-NMD Advisory Committee for Therapeutics (TACT) is a unique multi-disciplinary model centred upon an international group of academic and industry drug development experts, including patient representatives. TACT gives advice on the translational and development pathway of therapeutic programs in rare Neuromuscular Diseases. Due to its success in the neuromuscular field, a toolkit to replicate the TACT model has been produced. The Advisory Committee for Therapeutics (ACT) toolkit is intended to support rare disease communities outside of Neuromuscular to establish their own ACT, by providing them with step-by-step guidance and template documentation.

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European Reference Networks

Published by IRDiRC

Research and Drug DevelopmentNetworkRare DiseaseEuropean Reference NetworkClinical CollaborationResearch Collaboration

Participating in research provides patients with access to cutting-edge treatments and benefit the population and the health services as a whole by leading to the development of more effective, high quality, cost-efficient treatments and healthcare delivery models. ERNs represent an unicum in the clinical and research worldwide collaborative panorama, indeed 24 ERNs span the over 6000 rare diseases by involving 300 EU HCPs and over 1000 specialized units in 25 EU countries

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