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This is the title of the most recent article from the international research network - CDG&Allies-PPAIN. This article analyses and explains liver affectation in CDG patients. This work was done by WG CDG & Liver. To access the article's abstract, visit HERE. If you are interest in getting the manuscript, please write to sindromecdg@gmail.com. 
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Workshop "Think Metabolic, Think CDG" an educational initiative to Celebrate #RareDiseaseDay30/1/2017 "Think Metabolic, Think CDG" is a workshop organized by the Portuguese Association for CDG (APCDG) in collaboration with Centro Hospitalar Universitário de Coimbra. It will take place in Ordem dos Médicos, Coimbra, Portugal on 27th February 2017. This workshop aims to raise awareness for CDG, but also to join the celebrations of #RareDiseaseDay 2017. This event will count with the presence of Prof Jaak Jaeken, the medical doctor who described CDG for the first time in 1980. Lectures among CDG diagnosis, CDG & Liver, CDG recognisable phenotypes and other themes of relevance for rare diseases in general will be presented at the workshop. Everyone is welcome - Physicians, Researchers, Families and the general public! Resgistration is FREE,but MANDATORY and limited to the number of seats available.. Register HERE. We are looking forward to meeting you there!  Dr Peter Witters, a hepatologist from KU Leuven, Belgium is a new member of CDG&Allies-PPAIN - Working Group CDG & Liver (visit HERE). More and more professionals are joining this unique research network. It is extremely important to have an international network that aggregates experts and avoids effort duplication, whilst being led and inspired by patients and families' needs. ALL professionals and volunteers are extremely committed to improving the lives of CDG Patients. Thank you Dr Witters! Welcome!  "With Research Possibilities are endless" - this is the offical motto of the #RareDiseaseDay 2017. Spread the word and #SupportCDGResearch. Learn more about the endless possibilities CDG&Allies- Professionals and Patient Associations International Network (CDG&Allies-PPAIN, visit HERE) are creating for the CDG community. #CDGResearch We would like to Thank ALL who contributed to the CDG&Liver eQuestionnaire! Thank you for advancing CDG Research! We truly appreciate your time, effort and expertise! Thank YOU! Obrigada! Merci! Gracias!  These handmade lavender body butter will 1) leave you skin moister and hydrated 2)Create CDG Research Projects. CDG are RARE Diseases for which there is NO CURE. ALL Nabia Portugal's products have a very special ingredient: CDG solidarity. Email: biocosmeticforesearch@gmail.com. More at http://bit.ly/2hYkUN0  What do Silver-Russell syndrome and Beckwith-Wiedemann syndrome have in common? Have your heard about genomic imprinting? It is an epigenetic mechanism through which a certain gene(s) is silenced or expressed in a parent-specific manner. Another outstanding example of how Rare Diseases' Research can drastically improve knowlege http://bit.ly/2jAP4XP  LAST Call for ALL CDG Families to complete the CDG & Liver eQuestionnaire (http://www.apcdg.com/project-cdg--liver.html ). It’s YOUR Last chance to make the difference. Only together can we advance CDG Research – So, please, get on board - the CDG Community needs YOU! It takes 15min to complete and it’s available in 4 languages! ALL CDG Patients***NO Age Limit***With or Without Liver clinical history*** For us to reach our goal of 200 participantes, we need YOU until TOMORROW! Thank YOU!  This is the CDG & Liver Questionnaire (http://www.apcdg.com/project-cdg--liver.html ) final countdown, but YOU can still be part of it! ALL CDG Patients – ALL Ages – With or without liver problems – Available in 4 languages - This is your questionnaire. It is about YOU! We still need 20 more families to reach our 200 goal. YOU still have until 19/01/2017 to make your contribution to CDG Research. It takes 15min to complete! Let us ALL Count you In! Thank YOU!  #CDGNews: CDG Italia - the italian patient association for CDG - has lauched a new website.Congratulations to this CDG Association for their continuous work and efforts to promote CDG awareness and research. Don't miss the opportunity to visit their new online home at http://www.cdgitalia.org/. To see more CDG Patients groups visit HERE  |
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May 2018
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