APCDG - Congenital Disorders of Glycosylation
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Important Webinar

29/5/2017

2 Comments

 
#RareDiseasesNews: *** Important Webinar*** Emerging Biopharma & Rare Disease: Finding a Needle in a Haystack: Data-driven Patient Recruitment Solutions

Date: Thursday, June 08, 2017

Time: 02:00 PM Eastern Daylight Time

Duration: 1 hour
​
Register HERE 
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The Rare Strength of Mums

29/5/2017

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#RareDiseasesNews: A tribute to ALL Rare Mothers, who just keep on fighting for their children... No matter what! 💪👏
2 Comments

Rare Disease Therapies - What's next?

29/5/2017

2 Comments

 
#RareDiseasesNews:#GeneTherapy, Enzyme replacement have we reached the momentum for Rare Diseases Therapies?
BUT, remember only 5% of all Rare Diseases have a treatment - So, what's next?
Learn more HERE 
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Last days to register for the 3rd World Conference on CDG

26/5/2017

3 Comments

 
#WorldCDGConference: Have you registered on the 3rd World Conference on CDG? Last days to respond to our invitation !
Deadline 1st June 2017!
Register HERE 
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China defines Rare Diseases as a health priority

26/5/2017

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#RareDiseasesNews:#RareDiseases are becoming a priority worldwide #China. If the world unites progress will come faster and steadier.
Know more about China's efforts in tackling rare diseases HERE 
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This clinic is making childbirth safer for future Mums with disabilities

26/5/2017

4 Comments

 
#RareDiseasesNews: This clinic is helping women with disabilities birthing their children safely! Impressive! Read the full text HERE  
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India sets up a Rare Disease Patients' registry

26/5/2017

2 Comments

 
#RareDiseasesNews: India has set up a #RareDisease's registry - Registries will help understand the natural history of diseases, facilitate patients' recruitment for research and facilitate dialogue between patients, physicians and researchers http://bit.ly/2rJCYQX
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Education programs on Rare Diseases for healthcare professionals

26/5/2017

2 Comments

 
#RareDiseasesNews: The World is committed to educating a raising awareness for #RareDisease & #PersonalizedMedicine:
- NORD's FREE program: HERE 
- European Alliance for Personalised Medicine TEACH program: More information HERE 
​
Help raise awareness too- Share this with your physicians, nurses and therapists!
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How did Portugal celebrate #WorldCDGDay?

26/5/2017

6 Comments

 
#WorldCDGDay celebrations remember: This is how Lisbon (Portugal) united in commemoration of May 16 - A free workshop was held to promote CDG Research & Awareness at NOVA University! Thank you to all of the participants and speakers! It was a great event!
​Know more HERE  
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Best of Luck Sunnie Wong! #CDGThesisDefense

15/5/2017

2 Comments

 
May 16 is #WorldCDGDay and to celebrate it Dr Sunnie Wong will be defending her PhD thesis on "Identification of a novel pathomechanism underlying a congenital disorder of glycosylation: interplay between sugar metabolism, PI3K/AKT signaling, and protein glycosylation". This work was supervised by Prof Eva Morava!
Sunnie's big event is already on our Worldmap HERE
 Best of Luck Sunnie and Thank you for your incredible work!
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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