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.
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