About US
What we do
Who we help
>
Research
Resources
Rare CDG
Publications
Guia Metabolica
CDG Facts
Task Force CDG Communication
>
PMM2-CDG (CDG Ia)
PGM1-CDG (CDG It)
ALG6-CDG (CDG Ic)
EDUCATION
Awareness
Get involved World CDG Awareness Day 2019
>
Go Social World CDG Awareness Day 19
Spread World CDG Awareness Day 19
Plan An Event World CDG Awareness Day 19
Frame your CDG Awareness Campaign 19
Go green! Think CDG! ©Campaign 19
Volunteer World CDG Awareness Day 19
Press kit World CDG Awareness Day 19
Map of events for World CDG Awareness Day 2019
CrowdCDG
Awareness Day 2018
Awareness Day 2017
Awareness Day 2016
Rare Diseases
Community
Join Us - Membership
CDG Patient Groups
Empowerment
Events
1st CDG Satellite Meeting
Speakers - World Conference on CDG 2019
Registrations - World Conference on CDG 2019
Poster submission - World Conference on CDG 2019
Follow up - World Conference on CDG 19
Volunteer Registration - World Conference on CDG 2019
Previous Edition World Conference on CDG 2017
>
Follow up - World Conference on CDG 17
Speakers - World Conference on CDG 17
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About US
About U
S
·
What we do
·
Who we help
Families
We are helping patients and family members by:
Leveraging resources and knowledge needed to achieve a better understanding of the disease.
Promoting meaningful communications between patients, family members, researchers and physicians.
Enhancing research by matching the research and drug development design with the needs of the community.
Raising global awareness.
Encouraging community building.
Representing the community’s perspective and interests at conferences and relevant institutions.
Researchers
&
Clinians
Our activities within Academia and Health care providers are focused at:
Unifying and maintaining a successful multi-stakeholder collaborative network.
Acting as a primary point of contact with key opinion leaders (KOLs).
Matching the research design with the needs of CDG patients and the whole community.
Representing research projects within European initiatives/programs (such as Epirare, Eurordis).
Gathering and sharing information through attendance to medical congresses and programs.
Transaction of scientific-medical information and data into high quality patient-friendly information.
Promotion of a community-based outreach work, awareness, education and dissemination of information
.
Back to Top
About US
What we do
Who we help
>
Research
Resources
Rare CDG
Publications
Guia Metabolica
CDG Facts
Task Force CDG Communication
>
PMM2-CDG (CDG Ia)
PGM1-CDG (CDG It)
ALG6-CDG (CDG Ic)
EDUCATION
Awareness
Get involved World CDG Awareness Day 2019
>
Go Social World CDG Awareness Day 19
Spread World CDG Awareness Day 19
Plan An Event World CDG Awareness Day 19
Frame your CDG Awareness Campaign 19
Go green! Think CDG! ©Campaign 19
Volunteer World CDG Awareness Day 19
Press kit World CDG Awareness Day 19
Map of events for World CDG Awareness Day 2019
CrowdCDG
Awareness Day 2018
Awareness Day 2017
Awareness Day 2016
Rare Diseases
Community
Join Us - Membership
CDG Patient Groups
Empowerment
Events
1st CDG Satellite Meeting
Speakers - World Conference on CDG 2019
Registrations - World Conference on CDG 2019
Poster submission - World Conference on CDG 2019
Follow up - World Conference on CDG 19
Volunteer Registration - World Conference on CDG 2019
Previous Edition World Conference on CDG 2017
>
Follow up - World Conference on CDG 17
Speakers - World Conference on CDG 17
DONATE
BLOG