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: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💚
#RareDiseasesNews: EURORDIS - European Rare Diseases Organisationhas 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:There are times when #SpecialNeeds parents and caregivers just feel overwhelmed, negative with their heads filled with What Ifs that either lead to the darkest possible scenario or to a dead end of frustration/saddness/anger.
The advice of this special Mom is "Go there if you have to, but be brief. And always come back. "We agree with her 100%! What about you? #CDG 👌💚
Read it all HERE
CDG&Allies-PPAIN most recent publication on patient needs, patient-led solution, patient-centred care and research
#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!
#RareDiseasesNews:How to organize yourself and your child's therapeutic and stimulatory activities, when your child has a complex and multi-systemic condition?
It may seem your time management or prioritizing skills may not be up to the herculous task, but that's just your perfeccionism talking.
Anyway, here is a strategy that can enable EVERYONE to accomplish #CDG
What do you think? Do you have other strategies?
Share, comment, like and know more HERE
#RareDiseasesNews:"My child’s disability is not a disadvantage. It’s a different vantage point." How has your #SpecialNeeds child changed you? And his/her disability, how has it reshaped you?
Comment, like and share The Mighty
Read more HERE
Write something about yourself. No need to be fancy, just an overview.