How can you help our CDG community? Is easy! Share among your social media and other channels the information we make available within this section and website. This raises awareness, accelerates diagnosis, and secures better care and management for our CDG children and adults!
How to use social media and email safely?
CDG information is often found on social media. Facebook, YouTube, and Twitter can be helpful when updated and trustworthy. They're also fantastic to meet individuals with similar health challenges and inquiries. Mobile apps can track diet and activity. Some use them to track medicine or doctor visits. These methods are useful. However, not all are safe.
Follow credible social media sources. Always verify the source and author's credibility. Social media can provide health news and information. Some of this may be real. A friend or colleague's post doesn't indicate it's truthful or accurate. Ask the same questions on social media as a website. Many trusted organizations link social media to their websites. The World CDG Organization has official Facebook, YouTube, and Twitter pages.
Be careful with email and SMS. If you don't know or trust the sender, don't click on a link. Open attachments only from reputable sources. This is true on phone and computer.
About the Health news stories: News stories about complementary approaches to health are often on television, the Internet, and in magazines and newspapers. An interactive page from the National Center for Complementary and Integrative Health explains how to interpret complementary health stories published in the media. Read Know the Science: The Facts About Health News Stories.
- National Center for Complementary and Integrative Health. Finding and Evaluating Online Resources. https://www.nccih.nih.gov/health/finding-and-evaluating-online-resources. Updated January 2018. Accessed November 6, 2022.
- National Institute on Aging. Online Health Information: Is It Reliable? https://www.nia.nih.gov/health/online-health-information-it-reliable. Updated October 31, 2018. Accessed November 6, 2022. Updated July 27, 2022. Accessed November 6, 2022.
- National Cancer Institute. How to Find Cancer Resources You Can Trust. https://www.cancer.gov/about-cancer/managing-care/using-trusted-resources.
- The National Institute on Drug Abuse made available an exercise to help students to identify valid and reliable information. And made available a Worksheet named Questions to Ask as You Evaluate a Source of Health Information. Accessed November 6, 2022.
Vanessa Ferreira (CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).
Ana Verde (collaborator at CDG & Allies FCT, NOVA University), Javier López and Kevin Aguirre (research volunteers at CDG & Allies FCT, NOVA University)
Marisa Godinho (collaborator at CDG & Allies FCT, NOVA University)
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Accordingly, before taking any actions based upon such information, we encourage you to consult with the appropriate professionals. We do not provide any kind of medical or health advice. The use or reliance of any information contained on this site is solely at your own risk.