#CDGPublication: Another CDG&Allies-PPAIN publication has been published!👌👏🎉
​This project was led by Dr Cláudia Freitas and, like all CDG&Allies-PPAIN projects, co-led and inspired by the CDG Community! This project reinforces the fact that a patient-centered approach is the most effective way to improve care and research for CDG (or any other disease for that matter). You can access the article's abstract HERE and to get a full copy write to sindromecdg@gmail.com.

Thank you so much to the entire CDG Community for answering present and available any and every time we ask!

RareDiseasesNews: Instigating Rare Disease Patients and families to break the silence "We need people to talk about rare diseases like they are now learning to talk openly about mental health issues.". Putting an end to misconceptions, building a support network and raising #Awareness!
Visit HERE to know more. 

​#RareDiseasesNews: When your child is non-verbal making sure people understand him/her is a constant worry "Does the world see him as unintelligent? Does the world view him as someone who doesn’t understand?".
Read the testimony of a #CDG Mom and share your experience - How do you appease those nagging and troublesome thoughts?💚
​Full chronicle HERE

​#RareDiseasesNews:How can patients' actively participate in clinical research?
One of the most relevant answers is Patient Reported Outcomes (PROs).
​Know more about these validated and invaluable tools that are becoming indispensable in clinical trials👩‍🔬👨‍⚕️ 
​For more information go HERE

#CDGPublications: Your child has never done a cardiac check-up? Or only when he/she was really young? Is your GP reluctant to order those tests or do you feel your doctor does not know enough about CDG? Share with them CDG & Allies-PPAIN most recent publication on Cardiac Complications in CDG.
Find the abstract HERE and write to sindromecdg@gmail.com to get a free copy.
Together we will overcome every obstacle!💚