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In this section you will find 

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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!

Families with CDG often have a hard time finding reference centers and specialists that know about it. In many parts of the world, people may never get the definitive diagnosis they desperately need to get the right care because they can't get to a lab or to a clinician who suspects CDG. We are making a map of CDG by putting all of this information together, and you are welcome to tell us about reference centers and specialists that are leading the way in CDG by filling out the survey form below. Moreover, CDG patient groups can help point you in the right direction.

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Contact us and we will help you connect with the appropriate organisation!  
You can complement this information by looking at:

  • Orphanet which provides a directory of professionals and institutions and expert centres. CDG hub also provides a list here.
  • MetabERN is a European non-profit network established by the EU to facilitate access to the best available care and address the needs across the border of all patients and their families affected by inherited metabolic rare diseases. MetabERN represents 92 nationally certified Healthcare Providers from 27 European Member States, 41 Patients Organisations and is endorsed by the Society for the Inborn Errors of Metabolism (SSIEM). Check the MetabERN map gathering medical centres here.

What are the benefits of putting your reference centre and/or specialist on our World CDG diagnostic and/or research laboratories map? This powerful tool can be used in many ways, such as to (1)  help patients find a professional in their own country and to provide a platform for future diagnostic and/or research and analysis efforts that will be done in collaboration (2) accelerate definitive correct diagnosis and decrease time to diagnosis, (3) create an enabling network that can boost the co-organisation of events and training among different stakeholders, and (4) amplify opportunities to advance diagnosis and care for people living with CDG and their family members. This avoids unnecessary tests and treatments.

Would you like to feature your work in CDG or a reference care centre or specialist that leads care and management for people living with CDG in your country in our CDG Map? It’s easy! Complete the CDG Map Collecting Survey , found at the end of this webpage! 

 

World CDG Map collecting form

  • Current Electronic informed consent
  • Pinpointing your work in our World CDG Map
  • Demographics and needs for CDG information
  • Complete

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/  

 

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Author

Vanessa Ferreira (CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).

Revisors

Ana Verde (collaborator at CDG & Allies FCT, NOVA University). 

Content manager

Marisa Godinho (collaborator at CDG & Allies FCT, NOVA University). 

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.

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CDG
Congenital Disorders of Glycosylation
Rare Diseases
Care Standards
Clinical Practice Guideline
Methodology
Evidence-based Medicine
GRADE
Quality-of-care
Process-oriented Health Information Systems
Clinical Practice Guideline
Informed Decision-making
Non-medical Resources
Mannose phosphate isomerase-congenital disorder of glycosylation deficiency
Illnesses
MPI-CDG
Congenital disorders of protein N-glycosylation
Phosphomannomutase 2-CDG
PMM2-CDG
PGM1-CDG
D-galactose
clinical management guidelines
phosphoglucomutase 1 deficiency
phosphoglucomutase 1 deficiency

Page modified at Friday, November 25, 2022 - 15:02