Blog Archives - RESEARCH_CDG

CDG & Allies-PPAIN most recent research work focuses on patients and community needs and social solutions

9/29/2017

#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!

Fathers pass on more mutations to their offspring than Mothers: A look into a causing factor of rare childhood diseases

9/29/2017

#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

Is the interest in Orphan Drug market growing? Is it all about profit?

9/29/2017

#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

Are Orphan Drugs being produced fast enough?

9/29/2017

#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
More HERE

Health Literacy and Health Literature

9/22/2017

#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

First see the patient, then the disease:Cultivating a humanistic approach in medical care

9/22/2017

#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

Home-base care: Is it a good alternative for chronic disease patients?

9/22/2017

#RareDiseasesNews:For patients with chronic conditions trips to the hospital to get treatment or to the clinic to get a therapy are everything but RARE.
With the necessity of healthcare systems to update and revolutionize themselves as well as with the advent of eHealth, Home-based care has been gaining fans.
What do you think of home-based care? Can it work? And how? Do you have any experience with it?
Share your views and learn more HERE

A new Rare Diseases centre opens in Hungary

9/22/2017

#RareDiseasesNews:The first inpatient unit for Rare Diseases opens in Hungary!
It's very motivational and positive to see that more and more national, european and international initiatives committed to improving Rare Patients care & lives! 👍👏🇭🇺️🌍
Learn more HERE

Patient Reported Outcomes: A must-have research tool

9/15/2017

#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👩‍🔬👨‍⚕️
Visit HERE

Windows 10 is now more inclusive!

9/15/2017

#RareDiseasesNews:Microsoft has developed a version of Windows 10 software that responds to eye motion - It's just incredible when technology promotes #SocialInclusion and creates #EqualOpportunities 👌👏
DisCover more HERE