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The lay language platform for CDG, World CDG Organization, achieves first milestone and encourages the CDG Community to check out now the website https://worldcdg.org/ .
Several recent publications from CDG and Allies show that finding accurate and reliable information about CDG among the millions of online sources is a difficult task for almost everyone.
“In a heavy technology society, the internet provides access to information in a way unimaginable 50 years ago. Creating and ensuring access to information is a priority for CDG and Allies. Therefore, https://worldcdg.org/ centralizes access to information and improves communication around CDG, helping families to have a proactive attitude towards healthcare decision-making and research participation“ said Vanessa Ferreira (sibling to a person living with CDG and researcher and co-founder at CDG and Allies and Portuguese Association for CDG).
CDG and Allies publishes methodology to transform clinical management guidelines in lay language: a pioneer advance to empower and improve care for CDG families, and enable communication among doctors and families
The use of plain language in health literacy initiatives has provided positive effects in health communication, comprehension, and usability among nonclinical stakeholders. Plain language is the use of basic, assertive, and clear phrases that non-medical experts can understand.
Preparations for the largest CDG community-led conference kick off with a call for help to build the agenda you wish!
Recent research by CDG and Allies revealed that CDG families face disparities in diagnosis, care, access to information, and therapies due to funding, ethical, and legislative difficulties. Overall findings suggest establishing and strengthening a community-centric strategy for CDG drug development that supports active engagement from all stakeholders.
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