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Like All of Us

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European survey about Patients´ unmet need in medical research

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Self-help for improving the quality of life of people with rare diseases and their families

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New methods for health technology assessement

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Latest news

Survey on the impact of COVID-19 on rare disease patients and their families in Bulgaria

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European Commission launches “COVID-19 Clinical Management Support System”

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How many rare diseases are there?

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Is air pollution affecting the disease activity in patients with systemic lupus erythematosus?

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Multidisciplinary patient care in X-linked hypophosphatemic rickets

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Biological therapy in hereditary angioedema

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Differences in Major Bleeding Between Patients with Hemophilia A and Hemophilia B

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Overweight and obesity in children with X-linked hypophosphatemia

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Calls for tenders from the European institutions

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Perceived burden in dealing with different rare diseases

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Medical students’ knowledge and opinions about rare diseases

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The first atlas of rare diseases mortality

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Like All of Us

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Spinal muscular atrophy with respiratory distress type 1

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