World CDG Organization focus is on working together to achieve A2.C3.U2.R3.E2, to support practices that:
Advance Awareness and Advocacy
Implement standards of Care, boost Collaboration and encourage Clinical trials
Build Union to help break the isolation of the people living with CDG
Accelerate Understanding of CDG
Enable Research, facilitate Resources as community support services and enhance involvement within Regulatory bodies
Engage and Educate people living with CDG and patient organizations about diagnosis, standards of care, research, drug development and access to therapies.
Altogether, we strive to have a patient-focused drug development. This is a very promising and innovative approach whereby all parties combine their strength and expertise in a collaborative, dynamic and shared spirit. That is the key driver to achieving transformative, potentially life-saving therapies that can revolutionize the clinical treatment of a disease and offer new life to patients and concerned families.
"There is no power for change greater than a community discovering what it cares about."
by Margaret J. Wheatley
To find out more about how the projects achieve these outcomes, head to the different sections of our website.
Finding a powerful CDG community is just a click away. Join us.
