Blog Archives - APCDG - Congenital Disorders of Glycosylation

Maltese EU Presidency gives Top priority to Rare Diseases

22/3/2017

#RareDiseasesNews: The Maltese Presidency of the EU Council has brought Rare Diseases to the top of their priorities list! Collaboration and information sharing between member states has been highlighted as crucial.
Read the full article HERE
EURORDIS press release to know more about the action plan.
The press release is available HERE

CDG&Allies-PPAIN work presented in SPDM

21/3/2017

#CDGResearch:CDG&Allies-PPAIN had another work accepted at an International Symposium.
Dr Dorinda da Silva presented her work on Liver Involvement in CDG also featuring some preliminary results of the online liver questionnaire.
Congratulations Dr Dorinda!
It is very rewarding to see the scientific community recognize CDG&Allies-PPAIN work! #SPDM
Know more about the work of Working Group CDG & Liver HERE

Welcome Spring

21/3/2017

Spring, we had been waiting for you! #WelcomeSpring #CDGCommunity

Leuven, 15-16th July 217 - 3rd World Conference on CDG - REGISTER NOW

21/3/2017

#WorldCDGConference: 3rd World Conference on CDG is a unique event - Patients, Families & Professionals are gathered to discuss, exchange knowledge and create new opportunities! In order to advance CDG research and knowledge,
ALL experts are needed! We need YOU!
REGISTER NOW HERE

Liver Involvement in CDG explained in a Patient-Friendly Document

20/3/2017

#CDGResearch Download HERE a community friendly document derived from the recently published scientific article “Liver involvement in Congenital Disorders of Glycosylation (CDG)”,
Please keep in mind that this document is accessible in a FREE basis.
This was done by a group of enthusiastic volunteers of our network!

CDG CARE Grant Program for Families

20/3/2017

#CDGNews:CDG CARE has created Grant Programs for CDG Families!
Learn more and be informed about updates at CDG CARE and HERE

Registrations for the 3rd World CDG Conference are NOW OPEN!

20/3/2017

#WorldCDGConference: 80 participants have pre-registered for the 3rd World Conference on CDG - 15-16th July Leuven (Belgium)!
Why don't you join us as well?
This conference is dedicated to both Families & Professionals and covers a wide range of important topics! It is also a great opportunity to network.
REGISTER NOW HERE

Rare Disease Film Festival - an awareness and talent showcase

17/3/2017

#RareDiseasesNews:The Rare Disease Film Festival is a 1 day event taking place on October 3rd in Boston,USA.
This Rare Festival showcases films or documentaries (most under 20min) that show the reality of living with a Rare Disease.
An incredible awareness and talent display.
Why not take out your camera?
ACTION!
Know more HERE

Let's Raise Physician Awareness!

16/3/2017

#RareDiseasesNews: In Rare Diseases physician awareness is still a great unmet need! Know more HERE.
Let's change it!
To raise CDG awareness among Physicians use APCDG Publication service (visit HERE) & Resources (visit HERE) .
Better informed Professionals will lead to better Care!

The European Reference Networks - Making expertise on Rare Diseases COMMON throughout Europe

14/3/2017

#RareDiseasesNews:The European Reference Networks for Rare Disease promote knowledge and expertise SHARING, improve patient CARE and accelarate the process of finding a CURE! Share this video and promote Awareness!