CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies -PPAIN) keeps expanding and now counts with 42 collaborators.
This pionneer patient-led network has recently been joined by 2 new important additions: Dr Sandra Brasil (PhD, Portugal) and Dr Eleonora Passeri (PhD, Italy).
Dr Brasil will be using her expertise to advance the projects at the Working Group CDG Patient reported Outcomes (PROMs) (learn more HERE), whereas Dr Passeri will be acting as our social media consultant and analyst (learn more HERE)
If you are a CDG professional, patient or relative interested in collaborating with us, please contact email@example.com or visit HERE.
#CDGNews We are just so thrilled to announce that Eleonora Passeri has joined our international #CDGResearch network!!
Eleonora is both a science and social media consultant and we are very lucky to count with her expertise and motivation.
To know more about Eleonora, read her biography HERE
Also, you can't miss her #RareTalk interview HERE.
The CDG Community is very glad to have you join us - We know that Together we'll do great things!
#RareDiseasesNews: EURORDIS - European Rare Diseases Organisation has launched a new 5min-long survey for patients and families around the world to share their views on RESEARCH. You can contribute until October 26. Let's make the CDG Voice Heard, Let's identify our priorities as a Community! The survey is available in 23 languages!
Find it HERE
#RareDiseasesNews:What is #CDG? It stands for Congenital Disorders of Glycosylation and these are a group of metabolic disorders with over 100 different types. The most common form is called PMM2-CDG.
Watch this video to know more, share and like it to raise #Awareness! Thank you💚
CDG & Allies-PPAIN most recent research work focuses on patients and community needs and social solutions
#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 firstname.lastname@example.org.
Thank you so much to the entire CDG Community for answering present and available any and every time we ask!
Fathers pass on more mutations to their offspring than Mothers: A look into a causing factor of rare childhood diseases
#RareDiseasesNews:A new research work published in the highly prestigious journal Nature has shed some light on factors that cause rare childhood diseases. An interesting work!
Know more HERE
#RareDiseasesNews: Investment in therapies for Rare Diseases keeps growing. #PompeDisease
We need to cease this momentum and make it happen for #CDG!
Know more HERE
#RareDiseasesNews:“One of the ongoing struggles in the rare-disease field is the speed at which we can develop treatments”. How can we drive research?
Probably, collaborative approaches are one of the best options! What do you think? #BattenDisease #GeneTherapy
#RareDiseasesNews:“Medicine is my lawful wife and literature my mistress; when I get tired of one, I spend the night with the other.” - Chekhov.
An inspired and inspirational chronic about the importance of health literacy among patient and doctors, of communication and (good) health literature nowadays.
A masterpiece! Read, share and comment!
More information available HERE
#RareDiseasesNews: A reflection about a very important topic - Teaching doctors and other health professionals to see People before they see the disease. Stimulating professionals to have a humanistic approach rather than a pathology approach towards the patient has huge medical, emotional and social consequences.
Read, like, comment and share!
Full article available HERE