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!
Our community is in a relentless pursuit of therapies!
Non - nutritional replacement therapies for CDG
What is organ/cell transplantation?
Organ transplantation is a medical procedure in which there is the replacement of a faulty organ with a new and functional one. When the defect is in cells (for example your white blood cells that are responsible for fighting diseases), new cells with no defect are transplanted. By watching the video below you can learn more about organ transplantation.
Stem cell club prepared a series of educational videos for better understanding of what is cell transplantation. Watch below:
How Are Stem Cells Donated? by Stem cell club
How Does The Matching Process Work? by Stem cell club
What patients can organ transplantation help?
People living with MPI-CDG, DOLK-CDG, CCDC115-CDG, and ATP6VAP1-CDG. For these CDG, organ transplantation has been fully approved. For PGM1-CDG and PGM3-CDG, heart and cell transplantation were also reported. Such transplantations include heart (DOLK-CDG and PGM1-CDG), liver (MPI-CDG, ATP6VAP1-CDG and CCDC115-CDG) and bone marrow transplantation (PGM3-CDG).
To learn more about a successful transplant story in a patient with CDG, you can watch the following video:
How can organ/cell transplantation help people living with CDG?
Organ/cell transplantation can help people living with CDG because in some CDG and patients, certain organs are severely affected and damaged, including the heart, liver and the cells of the immune system. Organ/cell transplantation can help these patients by prolonging their lives.
Publications in CDG are constantly growing. We have selected articles of special interest for you, see below. Not all are open access, thus if you wish to access the full information, please contact us at https://worldcdg.org/contact
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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