#CDGNews

Show us your inner artist | CDG Art Project

There is an artist inside everyone of us. We would like to know our CDG Community artists.

 

Christmas is just around the corner and what better way to share and spread the holiday jolly than sending postcards to your friends and loved ones.

 

This year, for the CDG & Allies-PPAIN and the APCDG Christmas campaign we would like to count with our CDG Community artists and turn their wonderful drawings into postcards.

 

 

Will you join us in this project?

It will be SUPER fun!

 

1 – Ask your child/children to do a drawing,

2 – Scan it and send it to sindromecdg@gmail.com

3 – We will turn the drawings into postcards

 

These postcards will be sold as part of a fundraising campaign for research in CDG.

We look forward to meet our CDG Community artists!

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Clinical management guidelines for CDG

Research papers featuring clinical management guidelines for PMM2-CDG, MPI-CDG and PGM1-CDG

Clinical management guidelines for CDG

The majority of CDG don’t have a specific treatment, hence the management of the clinical symptoms and presentations is fundamental for patients and families well being and quality of life.

In an unprecedented effort, researchers, medical professionals and patient advocates of the CDG & Allies-PPAIN network and the APCDG, teamed up to combine their knowledge and to gather the existing scattered information across the literature.

This originated 3 research papers with management guidelines for the clinical symptoms and presentations for 3 CDG types:

1- PMM2-CDG,

2- MPI-CDG

3 – PGM1-CDG

These papers are of vital importance since they are tools to educate medical doctors about the symptoms presented by these patients and more importantly, the existing management solutions, which is vital for a swift treatment response.

These literature reviews are part of the CDG & Allies-PPAIN network strategy to raise awareness for CDG and to push for research and therapy development.

If you are interested in getting these papers just write to sindromecdg@gmail.com

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Let’s meet up for a CDG Virtual Coffee?

CDG Virtual Coffees

The World CDG Organization, the international research network CDG & Allies-PPAIN and the Portuguese association (APCDG) are very excited to invite you to participate in our most recent outreach and community building initiative:


                                          CDG VIRTUAL COFFEES 


When are they taking place? 1st Thursday of every month.

SAVE THE DATE

The first edition is on 5th November at 4 p.m (CET).

The topic of this 1st CDG Virtual Coffee is Immunological involvement in CDG (more information HERE). Rita Francisco is going to be the main speaker. Please confirm your attendance until 1st November by filling in this Google Form HERE.

 

Why are we organizing this initiative? Because the CDG Community (Families + Professionals) more than ever need a virtual and open networking forum.

What are the CDG Virtual Coffees?

A platform where relevant topics for CDG will be shared and discussed. They will mainly be related to clinical and research aspects.

English is the primary language.

How long are they?

Every CDG Virtual Coffee will take 30 min.

Who can participate?

It is open to all audiences and free of charge (primary audience: CDG Families and Professionals, but all of those interested or working in biology, medicine, or related fields).

Note that participation certificates are available upon request

AND, if you are a CDG Professional interested in presenting your work or a patient association with some exciting new initiative, please reach out to us to sindromecdg@gmail.com and we are happy to have you taking over our virtual café.

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World CDG Organization Newsletter - The 1st Edition is out!!!

1st edition

?World CDG Organization Newsletter: 1st EDITION is out!

‼️Read All about it HERE  ‼️

?. ?. ✊

Share. Unite. Empower2Act

Would you like to be a CDG Voice in the World ??#CDGWorldVoice

?‍??‍⚕️Do you have any important research highlights?

✊Is your CDG patient association promoting a ? initiative?

?‍?‍?‍?Do you want to share your personal CDG story?

 

Write to sindromecdg@gmail.com and we will include your exciting news in the next edition (November 2020).

?Please send word until 5 November 2020

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