QUESTIONS? CALL: +90(312)4728786
  • TR

Elis Ilac

Elis Ilac

Elis Ilac Company Description

T +90 (312) 472 87 86
Email: sales@elisilac.com

Elis Ilac
Ahmet Taner Kışlalı Mah. 2879. Sokak. Park Evleri Sitesi 2/2 Çayyolu-Çankaya-Ankara/TURKEY

Open in Google Maps
  • Home
  • Products
  • Our Services
  • About Us
  • Events
    • Arab Health 2022
    • ExpoPharm
  • Blog
  • Contact Us
ASK
  • Home
  • News
  • Rare diseases: Over 300 million patients affected worldwide
May 23, 2023

Rare diseases: Over 300 million patients affected worldwide

Rare diseases: Over 300 million patients affected worldwide

by arioadmin / Monday, 28 October 2019 / Published in News
rare diseases s

Rare diseases represent a global problem. Until now, the lack of data made it difficult to estimate their prevalence. Created and coordinated by Inserm, the Orphanet database, which contains the largest amount of epidemiological data on these diseases taken from the scientific literature, has made it possible to obtain a global estimate. Under the coordination of Inserm US14 Director Ana Rath, these data have shown that more than 300 million people worldwide are currently living with a rare disease. The study, published in the European Journal of Human Genetics, is the first to analyze the available data on rare diseases with such precision.

Systemic sclerosis, polycythemia vera and Marfan syndrome… These are obscure conditions, which are still largely unknown by the general public and differ broadly in their clinical expression. They do have one thing in common: they are very rare.

According to the European definition, a disease is considered rare when it affects fewer than 5 in 10,000 people. Few studies have been performed by the scientific community, and there is a lack of health professional expertise and of suitable treatments. This means that the thousands of rare diseases identified over the years cause immense suffering to many patients and their families, throughout the world.

The few epidemiological studies published on the subject so far rarely use general population registries. This made it difficult to establish their exact prevalence.

Yet such figures are needed if we are to identify priorities for health and research policy, understand the societal burden of these diseases, adapt the management of patients and, more generally, promote a real public health policy for rare conditions. “Given that little is known about rare diseases, we could be forgiven for thinking that their sufferers are thin on the ground. But when taken together they represent a large proportion of the population. Although rare diseases are individual and specific, what they have in common is their rarity, and the consequences which result from that”, emphasizes Ana Rath, from Inserm US14 (Information and service platform for rare diseases and orphan drugs).

Under her leadership, study author Stéphanie Nguenguan (Inserm US14), and her colleagues, used the Orphanet database to shed light on the issue.

 

0
  • Tweet
Tagged under: research

About arioadmin

What you can read next

Seasonal Flu Vaccine
What about the Vaccines?
What are the Covid-19 Variants?

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Recent Posts

  • Breast Cancer

    Worldwide, breast cancer accounts for 10.4% of ...
  • Cardiovascular disease (CVD)

    Cardiovascular disease (CVD) is a general term ...
  • Monkeypox Cases Worldwide

    Human monkeypox was first identified in humans ...
  • Types of Diabetes

    Diabetes is a group of deases in which the body...
  • Parallel Trade Definition

    Parallel trade or parallel import in pharmaceut...

Recent Comments

    Archives

    • November 2022
    • July 2022
    • April 2022
    • November 2021
    • October 2021
    • September 2021
    • August 2021
    • October 2019

    Categories

    • Articles
    • News
    • Scientific
    • Uncategorized

    Meta

    • Log in
    • Entries feed
    • Comments feed
    • WordPress.org

    Featured Posts

    • Breast Cancer

      0 comments
    • Cardiovascular disease (CVD)

      0 comments
    • Monkeypox Cases Worldwide

      0 comments
    • Types of Diabetes

      0 comments
    • Parallel Trade Definition

      0 comments

    ASK FOR YOUR ORDER

    Please fill this for and we'll get back to you as soon as possible!

    FOOTER MENU

    • Home
    • Products
    • Our Services
    • About Us
    • Events
      • Arab Health 2022
      • ExpoPharm
    • Blog
    • Contact Us

    NEWSLETTER SIGNUP

    By subscribing to our mailing list you will always be update with the latest news from us.

    We never spam!

    GET IN TOUCH

    T +90 (312) 472 87 86
    Email: sales@elisilac.com

    Elis Ilac
    Ahmet Taner Kışlalı Mah. 2879. Sokak. Park Evleri Sitesi 2/2 Çayyolu-Çankaya-Ankara/TURKEY

    Open in Google Maps

    • GET SOCIAL
    Elis Ilac

    © 2019 All rights reserved. Elis Ilac.

    TOP

    Our Spring Sale Has Started

    You can see how this popup was set up in our step-by-step guide: https://wppopupmaker.com/guides/auto-opening-announcement-popups/