Basic and Therapeutic research led by CDG families
For over a decade, the Portuguese Association for CDG, and later, CDG & Allies (founded in 2016), the family led CDG international research network, has been committed to exploring and supporting every basic and therapeutic research avenue. Both take a cutting-edge approach to accelerate finding treatments for CDG for every single person impacted by the disease. Many other patient groups are leading similar efforts! Stay tuned! Altogether, we are in a relentless pursuit of therapies!
Non - nutritional replacement therapies for CDG
There are very few approved therapeutic options for CDG, but recently there has been an increase in research and awareness that have boosted the discovery and investigation of several therapeutic options, shedding new light and hope into therapeutic avenues for CDG. Please note that the majority of the therapeutic strategies presented along this section (except for organ/cell transplantation) are currently under investigation and are not fully approved.
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!
In this section, you will find content specially created for you in lay language. Also, we have identified resources and information that may complement the existing content and improve your comprehension about therapies for CDG. We hope it helps you!
Keep in mind, you are not alone. Though Congenital Disorders of Glycosylation (CDG) are categorized as “rare” there is an amazing community at your fingertips working day and night to improve the lives of many people living with CDG and their family members. We want you to know everything that is available about therapies in lay language, but we suggest you enter into it at your own pace and comfort level.
Vanessa Ferreira and Sandra Brasil (CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG). Ines Santos, Tiago Martins, Madalena Raposo from Sci and Volunteer Program Nova School of Science and Technology 2021. Ana Sofia Rodrigues (content management, CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).
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