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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.
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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#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  #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  #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  #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 #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  #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  #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  #RareDiseasesNews: Yet another 2 rare diseases find new hope with the help of #GeneTherapy #LentiGlobin Access the full artiCle HERE  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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July 2018
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