This section is an initiative of the CDG Global Task Force on Science and Medical Communication and Outreach
"Coming together is a beginning; keeping together is progress; working together is success", by Henry Ford.
Seven international key opinion leaders joint in a volunteer basis the CDG Global Task Force on Science and Medical Communication and Outreach. The 3 major goals are:
(1) to increase understanding in a friendly language about the basic, translational and clinical research that is being done in the field of CDG
(2) to boost the community education & empowerment
(3) and to engage the community in relevant topics related to our current Biomedical findings for CDG
(1) to increase understanding in a friendly language about the basic, translational and clinical research that is being done in the field of CDG
(2) to boost the community education & empowerment
(3) and to engage the community in relevant topics related to our current Biomedical findings for CDG
Eva Morava Kozicz MD PhD
Tulane University Medical School, New Orleans, USA. Universiteit Ziekenhuis Leuven, Belgium |
Fiona Waddell,
Patient & Journalist The Netherlands |
Bobby Ng Human Genetics Program, Sanford Burnham Prebys Medical Discovery Institute, La Jolla, California, USA
|
Sandra Pinto
Mother to Martinzinho & Architect expert on Universal accessibility Spain |
Vanessa Ferreira, PhD, MBA
Portugal |
Together, they do major efforts to delineate a CDG global plan for communication and outreach. The target audience is: 1st . Families; 2nd . Professionals; 3rd . Media; and 4th . General public. In addition, resources for our community are created by volunteers (for instance, scientific and medical publications to put on spotlight or press releases highlighting relevant research, to be disseminated among social media and so forth). And finally, we wish to be able to create a Global CDG Science and Medical Communication and Outreach Toolkit. Hopefully, this can be helpful for CDG and related diseases.
VERY IMPORTANT, PLEASE READ IF YOU USE RESOURCES OR DOCUMENTS:
All our work is publicly available to help the CDG community. Importantly, our resources are done by volunteers. If you use our resources, please refer to http://www.apcdg.com/per-cdg-type.html as the source of information. This, help us to ensure that families and professionals know the original source of information. Additionally, you contribute to ensure that updated information reaches within all community . Also, please note that these are educational resources. THANKS!
VERY IMPORTANT, PLEASE READ IF YOU USE RESOURCES OR DOCUMENTS:
All our work is publicly available to help the CDG community. Importantly, our resources are done by volunteers. If you use our resources, please refer to http://www.apcdg.com/per-cdg-type.html as the source of information. This, help us to ensure that families and professionals know the original source of information. Additionally, you contribute to ensure that updated information reaches within all community . Also, please note that these are educational resources. THANKS!
To request publications write to sindromecdg@gmail.com
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