EGL Genetics Blog

CDG Care Mission and Purpose: Making a Difference in the CDG Community

Posted by Danyella Davis on Sep 15, 2016 11:00:00 AM

Thanks to Andrea Berarducci, CDG CARE President, Community and Parent Representative for this blog contribution in support of EGL's My Beautiful CHILD campaign.

CDG CARE stands for CDG Community Alliance and Resource Exchange (CARE).
CDG-CARE-Logo_CwT.jpg

CDG CARE is a nonprofit organization founded by parents and volunteers seeking to exchange resources and increase education among a group of disorders, known as Congenital Disorders of Glycosylation, or CDG. Our mission is to promote greater awareness and understanding of CDG, to provide information and support to families affected by CDG, and to advocate for scientific research to advance the diagnosis and treatment of CDG.



CDG CARE is governed by a very passionate and diverse group of volunteers that make up the organization's Board of Directors who work in conjunction with a Medical Advisory Board. The CDG nonprofit and medical community is global and CDG CARE works in partnership with several national and international organizations on various initiatives, including the NGLY1 Foundation, Foundation Glycosylation, Global Genes, Sanford Burnham Prebys Medical Discovery Institute, and the Portuguese Association for CDG (APCDG).

In order to fulfill the organization's mission, CDG CARE provides information and support to individuals diagnosed with CDG, their families and the professionals who work with them. When families are newly diagnosed, they are directed to CDG CARE. Through personal email, telephone calls, and medical resources made available to local physicians, each family is provided support, encouragement, education, and invited to join a private global community network of families and medical professionals who specialize in CDG.

Through regional and national conferences, CDG CARE Staff and Board members promote education to families and primary care physicians, in an effort to more accurately provide a diagnosis to undiagnosed and misdiagnosed rare disease families. CDG CARE works in collaboration with APCDG to plan and present national and international family and scientific conferences. 

These opportunities occur annually, with the international  European conference occurring in odd-numbered years (2015, 2017…) and  the National/North American conference being held in even-numbered  years (2016, 2018…). The next educational conference planning is well  underway for the “3rd World Conference on Congenital Disorders of Glycosylation (CDG) for families and professionals: United shaping the  future for CDG”, to be held July 15-16, 2017 in Leuven, Belgium. 

CDG Care Awareness Video

Additionally, CDG CARE is currently working in partnership with the World-AED (Awareness, Education, Diagnosis) Program 2015-2017. This is a global initiative to increase the number of suspected and recognized CDG cases among physicians in training, different subspecialists and other healthcare professionals. This initiative involves a 5-step medical poster series that will be disseminated among health care centers, hospitals, medical publications and social networks to help explain What is CDG, Major Signs and Symptoms of CDG and distinguishing among different subtypes, and to launch the newly established protocol CDG Diagnosis Pathway.

Through extensive awareness campaign efforts, CDG Awareness Day was officially recognized in the United States for the first time on May 16, 2016! In lieu of 25 State Governors proclaiming that May 16, 2016 shall be recognized officially as CDG Awareness Day, an application to the World Health Organization has been submitted to request that May 16th be recognized as World CDG Awareness Day for future years to come.

Lastly, a collaborative project involving direct patient/family participation is the Rare Commons initiative. This is a research project on rare diseases affecting children, where families and physicians work together to generate scientific knowledge on CDG through the establishment of a secure and comprehensive global clinical patient registry. This project is managed through Sant Joan de Deu out of Barcelona, Spain, and CDG CARE is the collaborative partner to disseminate information and promote enrollment of families and clinicians throughout North America.

There are several additional CDG CARE projects that are ongoing, including the publication of a bi-annual e-newsletter, development of CDG awareness videos, and the promotion of all CDG patients, globally, to participate in the CDG Natural History Protocol at the NIH.  For additional information and updates please visit the CDG CARE website at www.cdgcare.com, or send an email to [email protected]

 


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