APCDG - Congenital Disorders of Glycosylation
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    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
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What is YOUR kind of CDG Newsletter?

20/7/2017

6 Comments

 
The Portuguese Association for CDG (APCDG) and CDG&Allies-Professionals and Patient Associations International Network (CDG&Allies-PPAIN) are preparing a co-joint Newsletter.
Keeping faithful to their Patient-centricity model, they launch a 2 min to survey (with ONLY 3 questions!), so that CDG patients, families and professionals can express their preferences.
  • What kind of topics would you like to know more about?
  • How often would you like to receive our newsletter?
Thank you for sharing your views and for allowing us to meet your needs!
Let your Voice be heard!

***The survey will be open until 1st August***
Don't miss this chance!

​Access the questionnaire HERE
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6 Comments

A rare disease diagnosis is just the beginning of a new odissey

20/7/2017

8 Comments

 
#RareDiseasesNews: "Hope is only lost when we give up hoping." 
The journey of a rare disease diagnosis that you can read HERE at 
The Mighty
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8 Comments

Advices on disability from a Special Needs Mum

20/7/2017

14 Comments

 
#RareDiseasesNews: The impressive and insightful testimony of a Mum of a disabled child. Can you relate with these experiences/advices?
If you found it helpful please like and share! 
💚♿ 
​Read the full article HERE 

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14 Comments

10 Tourist attractions with changing facilities for All

20/7/2017

4 Comments

 
#RareDiseasesNews: Lack of adequate changing facilities is a huge and universal problem affecting families with #SpecialNeeds, which can hinder a day outing or a family holiday.
In these 10 tourist attractions you'll find no such problem!
Why not include them in your holiday plan?
If you know of more positive examples around the world, share it with us!
Access this list HERE 
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4 Comments

Rare Diseases take the big screen by storm

20/7/2017

3 Comments

 
#RareDiseasesNews:Rare Diseases are again under the spotlight - The Big Sick is based on real-life events and has been receiving amazing reviews. Oh, and it is a comedy!
​Look for it in a theatre near you! 
#StillsDisease
3 Comments

The role of Tech giants in rare diseases' healthcare

20/7/2017

2 Comments

 
#RareDiseasesNews: A wonderful article that discusses a very current & expanding topic - The impact of Giant Techs - Google, Facebook,Twitter or Wikipedia - in healthcare.
What's specific to Rare Diseases? 
#NGLY1#CDG 
A must ready and fully accessible article available HERE 
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2 Comments

Are rare diseases really that rare?

20/7/2017

79 Comments

 
#RareDiseasesNews: How Rare are Rare Diseases?
Government health organizations, pharma companies and patient advocates are working to solve the frequency-bias 
#OrphanDrugs 
Learn more HERE 
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79 Comments

The Rare Artist annual contest is now open

20/7/2017

4 Comments

 
#RareDiseasesNews: The EveryLife Foundation for Rare Diseases is organizing their annual contest dedicated to promote Art and artists of the Rare Disease Community. It is open to rare disease patients, family members, friends, caregivers and medical professionals.
Why not give it a try to raise 
#CDGAwareness? 
Know more HERE 
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4 Comments

Gene therapy brings renewd hope to rare disease patients

10/7/2017

21 Comments

 
#RareDiseasesNews: Yet another 2 rare diseases find new hope with the help of #GeneTherapy #LentiGlobin
Access the full artiCle HERE 
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21 Comments

Share and use the World Conference on CDG READY-TO-USE toolkit

10/7/2017

5 Comments

 
Help us build the momentum for the 3rd #WorldCDGConference, as together we can give visibility to #CDG and raise awareness. How? Use the toolkit available HERE
Thank you! See you soon😍
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5 Comments
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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