Why join us?
Because, you want
- faster and more equitable access to new or existing treatments
- to improve your understanding of the health policy, regulatory and research environments
- to connect with other families, organisations, professionals and related stakeholders affected by CDG
- to believe in the need for patient voices at all levels of decision-making when it comes to health policy
- to be involved as a partner in health research & policy decision-making
- unbiased, patient-friendly information on clinical trials and more
- to boost your organisation’s voice and capacity through engaging in our patient-led platform
- to be involved in shaping the future of healthcare for CDG
The World CDG Organization speaks with one voice.
World CDG Organization aims to bring all CDG patient organisations, local patient advocates and related stakeholders in every country into one global community to speak with one voice.
We are here for you. Join us
Benefits of joining us
- Join a community with a single goal: To help each other
- Receive our fortnightly updates on our activities, ways you can get involved, events or new initiatives
- Build the research, that will bring therapies for CDG
- Help CDG, to be represented at key political debates
- Participate at CDG events
- Raise awareness about CDG
- Have access to reliable information
- Have access to facilitated discussions / debates on emerging CDG issues with key decision-makers, patient leaders, scientists and industry representatives
- Have networking opportunities
- Have opportunities to participate in training and empowerment sessions
- Access to an informed, engaged and educated group
"Be the change you want to see in the world."
by Mahatma Gandhi