APCDG - Congenital Disorders of Glycosylation
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Rare Diseases


Facts

6%-10% of the world’s population will suffer from a rare disease at one point in their life.

Many of which have serious neurological manifestations. Early diagnosis of rare disorders is the key to halting disease progression. However, diagnosis of rare diseases can be challenging and is often delayed as a result of limited knowledge about these conditions among clinicians, as well as difficulties in accessing specialised services. 


Finding a cure or improved treatments for such patients is fundamental not only to their lives but also to society as a whole. Patients with rare diseases feel excluded from the benefits of medical progress and argue forcefully that, because of the unmet medical need caused by rare diseases, these disorders deserve attention in their own right to address medical and pharmaceutical needs: 
(1) the right to receive the best levels of care in the world;
(2) innovative therapies to patients suffering from rare diseases worldwide. 
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Learn more

Legal basic of EU policy

- Communication on rare diseases: Europe's challenges
- Recommendation on an action in the field of rare diseases 
- European Union Committee of Experts on Rare Diseases
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Related rare diseases initiatives

- EUCERD publications 
- EC Expert Group on Rare Diseases
- European Medicines Agency Committee for Orphan Medicinal Products
- FDA Office of Orphan Products Development (OOPD)

Rare diseases: a public health priority

EC public health- Rare diseases
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Projects and joint actions to advance rare dissesses research


Organizations & Health-related Websites


Advanced Information


Disclaimer: The information presented is intended to be used as a guide.

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  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG