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CDG: A Community of HOPE features Paula Videira

Prof Paula Videira is a researcher at NOVA University and the co-founder of the international network CDG & Allies - PPAIN.

She is an expert in glycoimmunology (which studies the role of sugars in immunologic response) and her main focus is the study of the role of glycosylation defects in immunological symptoms and find new therapies in this area.

She gives us HOPE!

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World CDG Organization Newsletter: 2nd edition is out!

2nd edition of the World CDG Organization Newsletter

📣 World CDG Organization Newsletter: 2nd 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 (January 2021).

💻 Please send word until 5 January 2021

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Our team is growing | Introducing Tatiana Rijoff

Introducing our new team member Tatiana Rijoff

 Let me introduce myself by saying that I am the mother of Camilla who was born in 2013 suffering from PMM2-CDG, and Gaia who was born in 2016. We live in Geneva where I worked for CERN between the years of 2011 and 2018.

 I am an eclectic person that has always cultivated different passions and roles at the same time. My ongoing  studies in Physics led me to CERN while simultaneously working full time in IT, all enriched by the surroundings of an international environment. I also speak Italian, French and English.

 Camilla's condition led me to cultivate yet a new passion: bioinformatics. As a person who loves to make a difference and contribute as much as possible for the betterment of the world, I think that being a bioinformatician in the CDG community helps me to do my bit. I also founded the CDG Swiss Association for which I’ve raised funds by writing two children's stories: “Camilla’s story” and “Camilla and the Muddle-Headed Magician”.

 I feel the CDG community to be, more than any other, a close community that truly fosters the sharing of goals, problems and successes and, although spread throughout the world, we are close in spirit.

We are thrilled to have Tatiana as our new team member and we are sure your work will make a significant impact on the CDG Community. 

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Deadline extension for the 5th WCCDG Agenda Survey

11/11/2020 - new deadline for the 5th World Conference on CDG Agenda Survey

Dear CDG Community,

We have great news!

We have extended the deadline for the Survey about the agenda of the upcoming 5th World Conference on CDG.

Now you have until 11/11/2020 to let us know which are the most important topics to be discussed.

Remember that the survey is very short (it only takes 5 minutes) and that your opinion is super important to us.

 

You can find the survey here:

http://bit.ly/Survey5thWCCDGAgenda

 

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Survey for the Agenda of the 5th World Conference on CDG

Survey for the Agenda of the 5th World Conference on CDG

Dear CDG Community, as you know, the 5th World Conference on CDG, which will be held on May 14-16 in Lisbon, is just around the corner! 

This year’s theme is “#StandUnited4CDG – Patient Centric approach that drives CDG therapeutic development: Impossible, Is Possible!” and as always we want to include all the Community in this unique event.

 

We are preparing our exciting agenda and we want to give a voice to your concerns and wishes.

 

Can you help us?

We have prepared a survey with the main subjects to be presented and we would like to know which are the most important for you.

Can you give us 5 minutes of your time and help us shape this unique and important event?

You can find the survey here: http://bit.ly/Survey5thWCCDGAgenda

Share your thoughts with us until November 6.

Thank you!

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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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