Recommendations from the IRDiRC Working Group on methodologies to assess the impact of diagnoses and therapies on rare disease patients

Recommendations from the IRDiRC Working Group on methodologies to assess the impact of diagnoses and therapies on rare disease patients

Abstract Rare disease patients face many challenges including diagnostic delay, misdiagnosis and lack of therapies. However, early access to diagnosis and therapies can modify the management and the progression of diseases, which in return positively impacts patients, families and health care system...

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Bibliographic Details
Main Authors: Galliano Zanello, Chun-Hung Chan, David A. Pearce, IRDiRC Working Group
Format: Article
Language:English
Published: BMC 2022-05-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare diseases
Diagnosis
Therapies
Socio-economic impact
Patients
Families
Online Access:https://doi.org/10.1186/s13023-022-02337-2

Internet

https://doi.org/10.1186/s13023-022-02337-2

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