Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments

Abstract Common diseases, such as cancer, diabetes mellitus, or Alzheimer's disease, affect a large segment of the population, which justifies the enormous financial allocations for translational and clinical research. In contrast, the ~5,000 known rare disorders affect only very few patients e...

Full description

Saved in:
Bibliographic Details
Main Authors: Christoph Klein, William A Gahl
Format: Article
Language:English
Published: Springer Nature 2017-11-01
Series:EMBO Molecular Medicine
Online Access:https://doi.org/10.15252/emmm.201708365
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1849343597469499392
author Christoph Klein
William A Gahl
author_facet Christoph Klein
William A Gahl
author_sort Christoph Klein
collection DOAJ
description Abstract Common diseases, such as cancer, diabetes mellitus, or Alzheimer's disease, affect a large segment of the population, which justifies the enormous financial allocations for translational and clinical research. In contrast, the ~5,000 known rare disorders affect only very few patients each, even though the cumulative disease burden is substantial. This influences not only the general appreciation of research to address rare diseases, but also the allocation of research funds. Importantly, however, studying rare diseases has contributed enormously to our understanding of human biochemistry, cell and developmental biology, and physiology. For example, Linus Pauling and Vernon Ingram's discovery of a structural difference and amino acid variant in the beta‐globin protein, which causes monogenic hemoglobinopathies such as sickle cell disease or thalassemia, issued in the era of molecular medicine (Pauling et al, 1949). Subsequently, numerous genetic defects in critical genes controlling differentiation and/or function of cells and organs have been identified and opened new possibilities for molecular diagnosis.
format Article
id doaj-art-75237b6ae77e4877bc7558009543fa33
institution Kabale University
issn 1757-4676
1757-4684
language English
publishDate 2017-11-01
publisher Springer Nature
record_format Article
series EMBO Molecular Medicine
spelling doaj-art-75237b6ae77e4877bc7558009543fa332025-08-20T03:42:56ZengSpringer NatureEMBO Molecular Medicine1757-46761757-46842017-11-011011310.15252/emmm.201708365Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatmentsChristoph Klein0William A Gahl1Department of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU MunichUndiagnosed Diseases Program and National Human Genome Research Institute, National Institutes of HealthAbstract Common diseases, such as cancer, diabetes mellitus, or Alzheimer's disease, affect a large segment of the population, which justifies the enormous financial allocations for translational and clinical research. In contrast, the ~5,000 known rare disorders affect only very few patients each, even though the cumulative disease burden is substantial. This influences not only the general appreciation of research to address rare diseases, but also the allocation of research funds. Importantly, however, studying rare diseases has contributed enormously to our understanding of human biochemistry, cell and developmental biology, and physiology. For example, Linus Pauling and Vernon Ingram's discovery of a structural difference and amino acid variant in the beta‐globin protein, which causes monogenic hemoglobinopathies such as sickle cell disease or thalassemia, issued in the era of molecular medicine (Pauling et al, 1949). Subsequently, numerous genetic defects in critical genes controlling differentiation and/or function of cells and organs have been identified and opened new possibilities for molecular diagnosis.https://doi.org/10.15252/emmm.201708365
spellingShingle Christoph Klein
William A Gahl
Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments
EMBO Molecular Medicine
title Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments
title_full Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments
title_fullStr Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments
title_full_unstemmed Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments
title_short Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments
title_sort patients with rare diseases from therapeutic orphans to pioneers of personalized treatments
url https://doi.org/10.15252/emmm.201708365
work_keys_str_mv AT christophklein patientswithrarediseasesfromtherapeuticorphanstopioneersofpersonalizedtreatments
AT williamagahl patientswithrarediseasesfromtherapeuticorphanstopioneersofpersonalizedtreatments