ManNAc

Sugars
- Mannose
- Fucose
- Galactose
- Sialic acid
- ManNAc
- Ace-ER
- Ribitol
- GlcNAc-PI
- GlcNAc
- Concerns
Ions
- Magnesium
- Iron
- Manganese
Other
Non-Nutritional

Our community is in a relentless pursuit of therapies!

Nutritional replacement therapies for CDG

ManNAc (N-Acetylmannosamine) is considered for the following CDG types:

GNE-CDG (more information about this specific CDG type HERE, HERE, HERE and HERE)

About GNE-CDG: is characterized by a progressive muscle weakness due to defects in the GNE gene that is crucial for the production of a diverse family of sugars - the sialic acids. Thus, you may find that this condition is referred to as neuromuscular or CDG. Watch the video below to learn about what is GNE Myopathy.

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!

What is ManNac?

ManNac (N-Acetylmannosamine) is a sugar used to make sialic acid (another sugar very important in glycosylation).

How can ManNac help people living with GNE-CDG?

The GNE gene (glucosamine (UDP-N-acetyl)-2-epimerase/N-acetylmannosamine kinase) has information to make a protein that is essential for the production of sialic acid inside our cells. As this protein uses ManNac to make sialic acid, by giving external ManNac, normal glycosylation could be restored in the cells. A clinical trial (ClinicalTrials.gov NCT02346461) found that ManNac supplementation was able to slow the decline in upper and lower extremity strength and physical function in general, compared with the natural progression of the disease. Click here to know more about one of these trials.

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

Safety and efficacy of N-acetylmannosamine (ManNAc) in patients with GNE myopathy: an open-label phase 2 study

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.

We are here to help
Should you need more details please do get in touch with our Team

Ensure that you are up to date, and join our mailing list:

Subscribe our World CDG magazine

For further learning about CDG, move ahead to our community tailored sections across https://worldcdg.org/

Didn't find what you are looking for?

Your question may help others

Ask a Question

Authors

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).

Disclaimer

The Site cannot and does not contain medical or health advice. The information is provided for general informational and educational purposes only and is not a substitute for professional advice.

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.

Didn't find what you are looking for?

Authors

Disclaimer

Follow Us