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Rare Diseases Epidemiology

Overview of attention for book
Cover of 'Rare Diseases Epidemiology'

Table of Contents

  1. Altmetric Badge
    Book Overview
  2. Altmetric Badge
    Chapter 1 Rare Diseases – Avoiding Misperceptions and Establishing Realities: The Need for Reliable Epidemiological Data
  3. Altmetric Badge
    Chapter 2 Rare Diseases Epidemiology Research
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    Chapter 3 Evidence-Based Medicine and Rare Diseases
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    Chapter 4 Prevention, Diagnosis and Services
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    Chapter 5 The Importance of Case Reports in Advancing Scientific Knowledge of Rare Diseases
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    Chapter 6 Patient registries: utility, validity and inference.
  8. Altmetric Badge
    Chapter 7 Biobanking in Rare Disorders
  9. Altmetric Badge
    Chapter 8 Evaluation of the validity and utility of genetic testing for rare diseases.
  10. Altmetric Badge
    Chapter 9 Rare Diseases Epidemiology
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    Chapter 10 Statistical Methods for the Geographical Analysis of Rare Diseases
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    Chapter 11 Clinical Trials and Rare Diseases
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    Chapter 12 A Regulatory Overview About Rare Diseases
  14. Altmetric Badge
    Chapter 13 Rare Diseases Epidemiology
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    Chapter 14 Rare Diseases Social Epidemiology: Analysis of Inequalities
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    Chapter 15 Quality of Life and Rare Diseases
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    Chapter 16 Cost of illness and economic evaluation in rare diseases
  18. Altmetric Badge
    Chapter 17 The Burden of Rare Cancers in Europe
  19. Altmetric Badge
    Chapter 18 Hereditary Channelopathies in Neurology
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    Chapter 19 Osteochondral Diseases and Fibrodysplasia Ossificans Progressiva
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    Chapter 20 The Prevalence of Congenital Anomalies in Europe
  22. Altmetric Badge
    Chapter 21 Rare Autoimmune Diseases
  23. Altmetric Badge
    Chapter 22 Epidemiology of Rare Anaemias in Europe
  24. Altmetric Badge
    Chapter 23 Inherited Metabolic Rare Disease
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    Chapter 24 Rare Diseases Epidemiology
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    Chapter 25 Creating a European Union Framework for Actions in the Field of Rare Diseases
  27. Altmetric Badge
    Chapter 26 National Plans and Strategies on Rare Diseases in Europe
  28. Altmetric Badge
    Chapter 27 Ethical Aspects on Rare Diseases
  29. Altmetric Badge
    Chapter 28 Advocacy Groups and Their Role in Rare Diseases Research
Attention for Chapter 14: Rare Diseases Social Epidemiology: Analysis of Inequalities
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Chapter title
Rare Diseases Social Epidemiology: Analysis of Inequalities
Chapter number 14
Book title
Rare Diseases Epidemiology
Published in
Advances in experimental medicine and biology, August 2010
DOI 10.1007/978-90-481-9485-8_14
Pubmed ID
Book ISBNs
978-9-04-819484-1, 978-9-04-819485-8

Kole A, Faurisson F, Anna Kole, François Faurisson MD, François Faurisson


Manuel Posada de la Paz, Stephen C. Groft


Rare disease patients experience particular obstacles in accessing high quality healthcare. These obstacles include but are not limited to: (i) lack of scientific knowledge of their disease, (ii) lack of access to correct diagnosis, (iii) delays in diagnosis, (iv) lack of appropriate multidisciplinary healthcare, (v) lack of quality information and support at the time of diagnosis, (vi) undue social consequences, (vii) inequities and difficulties in access to treatment, rehabilitation and care, (viii) dissatisfaction with and loss of confidence in medical and social services, (ix) denied treatment by health professionals and (x) lack of availability of orphan drugs. Three surveys and their subsequent analysis, conducted by the European Organisation for Rare Diseases (EURORDIS), a non-governmental patient driven alliance of European patient organisations, demonstrate several of these obstacles by describing the experience of rare disease patients across 18 rare diseases and over 24 European countries as well as highlighting inequalities that exist between them.

X Demographics

X Demographics

The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 90 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 1 1%
South Africa 1 1%
Brazil 1 1%
Unknown 87 97%

Demographic breakdown

Readers by professional status Count As %
Researcher 14 16%
Student > Bachelor 12 13%
Student > Master 11 12%
Other 8 9%
Student > Ph. D. Student 8 9%
Other 19 21%
Unknown 18 20%
Readers by discipline Count As %
Medicine and Dentistry 30 33%
Nursing and Health Professions 13 14%
Biochemistry, Genetics and Molecular Biology 11 12%
Social Sciences 4 4%
Agricultural and Biological Sciences 3 3%
Other 10 11%
Unknown 19 21%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 2. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 05 October 2015.
All research outputs
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Outputs from Advances in experimental medicine and biology
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Outputs of similar age
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Outputs of similar age from Advances in experimental medicine and biology
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Altmetric has tracked 22,656,971 research outputs across all sources so far. This one is in the 35th percentile – i.e., 35% of other outputs scored the same or lower than it.
So far Altmetric has tracked 4,902 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.0. This one has gotten more attention than average, scoring higher than 54% of its peers.
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We're also able to compare this research output to 11 others from the same source and published within six weeks on either side of this one. This one is in the 27th percentile – i.e., 27% of its contemporaries scored the same or lower than it.