#CDGAwareness

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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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 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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CDG: A Community of HOPE features Paola de Haas

💚CDG: A Community of HOPE!💚

Paola de Haas is one of the young faces of CDG Research 👩‍🔬 at the Radboud university medical center (Nijmegen, Netherlands). She shares that she dedicates her work to develop CDG models and study immunology in CDG. Currently, she is working with a zebrafish CDG model to understand the mechanisms behind the immune issues observed in CDG patients. With this work, she is contributing to what she thinks is the main need in CDG research: to build as much knowledge as possible that in the future can be translated into therapeutic options.

She gives us HOPE!💚

# CDGResearch #CDGCommunity #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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CDG: A Community of HOPE features Rosália Ferreira

💚CDG: A Community of HOPE!💚
Rosália Ferreira is a Super CDG Mom and advocate. She highlights the difficult road for Liliana's sweet and sour diagnosis. She shares the main worries and wishes as a mom (autonomy, management and curative therapies) and the benefits of belonging to a CDG association.
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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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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