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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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CDG: A Community of Hope_interview w/ Carlota Pascoal

💚CDG: A Community of HOPE!💚

Our interview today features Carlota Pascoal, an extremely motivated researcher and patient advocate for CDG.

She will tell us about the main goals of the international network CDG & Allies-PPAIN which is aimed at promoting CDG awareness and research and also educating and empowering #CDGpatients and their families.

She gives us HOPE! 💚

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2nd CDG Virtual Coffee: Stroke-like episodes & Seizures in CDG

2nd CDG Virtual Coffee

The 2nd Edition of the CDG Virtual Coffees is fast approaching!

What is it about? Stroke-like episodes and seizures in CDG
When? December 11, 2020, at 4 p.m (CET)
With who? Dr Mercedes Serrano from Sant Joan de Déu Hospital

REGISTER NOW and send your QUESTIONS HERE
by December 6th (Sunday).
 

Your questions are extremely important to make a session that corresponds to your expectations!


We are looking forward to e-meeting you for a warm cup of coffee!
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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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CDG Therapeutic Trials: UPDATE 

CDG Therapies

CDG Therapeutic Trials:  An expanding world of therapeutic opportunities

Two years have gone by since the publication of the review paper "CDG therapies: From Bench to Bedside" and fortunately the number of clinical trials and therapeutic developments for CDG have been on the rise.

For this reason, we have decided to provide the CDG Community with an up-to-date list of CDG Therapeutic Trials available HERE

 

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“CDG: A global Overview” Webinar in Portuguese is now available on YouTube

CDG: A global Overview” Webinar in Portuguese

In case you missed it on the 6th of November…

“CDG: A global Overview” Webinar in Portuguese is now available on YouTube!

In this 1st Edition the Brazilian Association for CDG brings us speakers Dr. Kimiyo Raymond (USA), Dr. Jaime Brum (BR), Dr. Vanessa dos Reis (PT) and Dr. Charles Lourenço for an exciting talk!

Watch it here:

https://youtu.be/9RNyLvcBAXU

 

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CDG: A Community of HOPE features Cristina Pérez Navas

💚CDG: A Community of HOPE!💚

Our interview today features Cristina Pérez Navas, a dedicated CDG mom and advocate.

She will tell us how the CDG diagnostic changed her life and also how the work of the Spanish CDG Association (AESCDG) is helping #CDGpatients and their families.

She gives us HOPE! 💚

 

Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making and altering sugars and attaching them to proteins and lipids. There are over 140 different CDG types.

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CDG: A Community of HOPE features Julie Bonache

💚CDG: A Community of HOPE!💚  

Today, our interview features Julie Bonache, a CDG Mom behind the French association for CDG "Les P'tits CDG". She shares how the CDG diagnosis changes her life and explains which are advantages of belonging to a patient group.

She gives us HOPE!💚

#CDGCommunity #CDGDiversity #RareNotAlone

Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making and altering sugars and attaching them to proteins and lipids. There are over 140 different CDG types.

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The Agenda is OUT I Upcoming World Conference on CDG for Families and Professionals

CDG Conference Agenda

***4th Official Announcement ***

5th World Conference on CDG for families and professionals

The multidisciplinary scientific forum to advance and disseminate knowledge in the field WITH and FOR CDG families and professionals

***DRAFT PROGRAM (Access it below)***



Conference Theme: #StandUnited4CDG Patient Centric approach that drives CDG therapeutic development: Impossible, Is Possible!”

When: Friday 14 to Sunday 16 May 2021

How: This edition, will exceptionally be a hybrid event, due to the COVID-19 pandemic. Thus, we will combine "live" in-person event for those that can join us at Faculty of Sciences and Technology of Nova University of Lisbon (FCT-UNL) (Monte da Caparica, Portugal) and conference sessions will ran "virtually".

Where: For those in-person Auditorium Auditório Caixa Geral de Depósitos

Programme is scheduled according to Lisbon time. Please check the corresponding times in your time zone HERE

Poster session: On Sunday 16th May 2021 & World CDG Awareness day 2021 will be a live Q&A poster session.

12th April 2021 is the due date for poster submission in order to participate in a poster exhibition during the 5th World Conference on CDG for families and professionals.

For the submission the following information is required:

  • Title of the poster
  • Presenter details (name and title)
  • contact email 
  • Abstract
  • PDF of the poster (resolution for printing on A0 format)

Major Novelty: The majority of the conference sessions enter under the scope of the “Think Metabolic, Think CDG” Academy for families, academia, medical doctors and industry.

The “Think Metabolic, Think CDG” Academy aims to provide CDG stakeholders the knowledge and skills needed to become experts in CDG medicines research and development. Thus, by securing your attendance and actively participating during the conference, you will be able to achieve the “CDG Expert Level 2”. Further details, SOON! Stay tuned! 

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