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- Patients Involved – Patient friendly informed consentA collaboration of a patient organisation with a pharmaceutical company that resulted in a major revision of the Informed Consent document and of the child and adolescent assent forms.
- Patients Involved - Patient organisations' input on a rare disease registryInvolvement of European Tuberous Sclerosis Complex Patient Organisations (E-TSC) establishing an European registry of patients living with Tuberous sclerosis complex (TSC) to address some gaps in understanding the clinical course of TSC and the therapeutic outcomes.
- Patients Involved - Patient organisation promotes Phase I clinical trialInvolvement of the foundation ‘Children with SMA’ (spinal muscular atrophy) with an academic institution in Ukraine to design a pilot clinical trial addressing issues in SMA clinical trials.
- Glossary: European Union Committee of Experts on Rare Diseases
- Glossary: European Union Clinical Trials Register