APCDG - Congenital Disorders of Glycosylation
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#RAREvolution petition

22/9/2016

1 Comment

 
Sign the #RAREvolution petition !
Its aim is to increase awareness and support for research into RARE Diseases worldwide!
Their listed policies changes include:
  1. Increase allocation of resources
  2. Promote a multi-disciplinary and coordinated approach
  3. Adopt specific incentives policies
  4. Leverage existing knowledge and optimize the use of existing drugs
  5. Widen health economics criteria in considering the cost-effectiveness of RDs research
  6. Adopt appropriate and internationally recognized rare disease classification systems
  7. Invest in innovative diagnostic methods of rare diseases to enable early intervention
  8. Set criteria for ante-natal and newborn screening and ethical controls
  9. Recognize the expanding role of patient groups in contributing to develop and foster knowledge and awareness on rare diseases, and include patients at all levels in the development of policies, research agenda and protocols for specific rare diseases

 Show you care, sign NOW at http://chn.ge/2cqyEC7
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1 Comment
Wilson Fox
10/6/2022 01:23:43 am

I suffered from what they called peripheral artery disease (PAD). I have been suffering for years, Me and my wife searched for a medical cure, and then we came across a testimony of a man who suffered the same and was cured by Dr Chief Lucky. So my wife and I contacted Dr Chief Lucky via an email and thank God he replied. I explained what was wrong and he sent me herbal medicines that helped heal me completely. I am happy to say that herbal medicine is the ultimate and Dr Chief Lucky I am grateful. You can contact him on his email: chiefdrlucky@gmail.com or whatsapp: +2348132777335, Facebook page: http://facebook.com/chiefdrlucky or website: https://chiefdrlucky.com/. Dr Chief Lucky said that he also specializes in the following diseases: LUPUS, ALS, CANCER, HPV, HERPES, DIABETES, COPD, HEPATITIS B, HIV AIDS, And more.

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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