World CDG Organization

World CDG Organization (WCDGO) is the unified voice of people living with Congenital Disorders of Glycosylation (CDG).

[World CDG Organization @worldCDG]

📣First data shared from the FCDGC Natural History Study 📣

Check the most recent findings from our brilliant clinical researchers which looked at a group of 2️⃣8️⃣0️⃣ individuals with CDG diagnoses.

[The Journal of Inherited Metabolic Disease @JIMD_Editors]

First data shared from the FCDGC Natural History Study looking at 280 CDG diagnoses.

Unsurprisingly, N-linked CDG (including PMM2) remain the most common type with the evolving group of GPI anchor disorders the second most common.

Read more 👉https://t.co/PJM9TblHhn

#cdg

[World CDG Organization @worldCDG]

#WorldCDGDay 💚
Today, we stand together to shine a light on CDG🎗️
Let's raise awareness and support for those affected by CDG. Let’s spread love and stand tall together! Share your green colours, awareness activities, and your hopes for the future!
#StandUnited4CDG #CDGGoGreen

[World CDG Organization @worldCDG]

🌟3 DAYS left to #WorldCDGDay🌟

Join us in spreading awareness and support for those affected by CDG. Together, we can make a difference! 💚💚💚

👉 Still wondering how to get involved? Find out more at https://t.co/PodsBIkFBs

#StandUnited4CDG #CDGGoGreen

[World CDG Organization @worldCDG]

It’s ⏰ for the #CDGGoGreen movement 💚

👉 Change your Social Media banner and profile picture to raise awareness for CDG
➡️ Share this post and tag three friends to join us ! Together we are stronger! 💪👫

Get them at https://t.co/1A1QFVhqfT

#WorldCDGDay #StandUnited4CDG

[World CDG Organization @worldCDG]

💚 2 weeks to go to #WorldCDGDay 💚

Are you ready to raise awareness on May 16th? 💪

👉 Prepare now! Explore and use the vast list of materials, available in several languages 🌎

Access it now at https://t.co/k96blp1yxm

#StandUnited4CDG #CDGGoGreen

[World CDG Organization @worldCDG]

We are deeply committed to advocating for better mental health. Within this initiative, Vanessa will be amplifying the voices of rare disease families, ensuring their needs are recognized, understood, and addressed 💙
#RareDisease #MentalHeath

[World CDG Organization @worldCDG]

#Resilience in #CDG ✊
Understanding resilence levels helps people developing strategies to face daily adversities.
In our latest article, we show the importance of caring for #mentalhealth and of professional and social support for our community 🌈
👉 https://t.co/XICEdwfgBh

[World CDG Organization @worldCDG]

🦓𝗖𝗵𝗮𝗺𝗽𝗶𝗼𝗻𝗶𝗻𝗴 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲s🌍!

Vanessa Ferreira will represent CDG and other rare diseases at the IRDiRC Task Force: "A Framework to Assess Impacts Along the Rare Disease Patient and Family Journey." 👏

📍More information at https://t.co/DQi0zfeBC7

[World CDG Organization @worldCDG]

4 weeks to go!📣

May 16 is #WorldCDGDay ➡️ time to start painting the World 𝐆𝐑𝐄𝐄𝐍! 🌍 💚 🌏

Join the #CDGGoGreen campaign that encourages people to use green on May 16th, to show support for children and adults affected with CDG 🙌

#LetsComeTogether

[World CDG Organization @worldCDG]

🌍✨ Voices of CDG Families and Advocates✨🌟

📣 You can read all about the stories, insights, and experiences of the worldwide CDG community and get inspired #6thWorldConferenceCDG Report a https://t.co/lxhwcIEWH4

#CDGCommunity #CDGAdvocacy

[World CDG Organization @worldCDG]

✨ Happy New Year ✨
Let's welcome the new year with open hearts and a renewed sense of hope🌈 Let's cherish the diversity of our community and appreciate the unique strengths that each member brings to the table. Let's build bridges and strive for a better future together 🥂

[World CDG Organization @worldCDG]

The Rare Disease Day 2024 official video gathers worlwide stories and experiences of the rare disease community and is available in 60 languages! https://t.co/i3EAHys8p2
Lets come together leading up to Rare Disease Day 29 Feb 2024
Hit share and raise awareness!
#RareDiseaseDay

[World CDG Organization @worldCDG]

📢The #6thWCCDG report is out! 📘 Dive into the session summaries, insights and breakthroughs at https://t.co/lxhwcIFuwC 🚀

Let's amplify awareness and support for CDG. Share the report, join the conversation, and be part of the movement! 🤝

#CDGAwareness #StandTogether4CDG

[World CDG Organization @worldCDG]

🎙️2🆕#JIMDpodcast episodes!

🎧Shortcast: PIGO-CDG: A case study, phenotypic expansion, lit review & nosological considerations feat Dr Starosta✨https://t.co/5Zcz5DvTCJ

🎧CAD Deficiency: Beyond the genetics feat Dr Wortmann, Dr Freeze & Dr Ramón-Maiques https://t.co/St6tdGsOQG

[World CDG Organization @worldCDG]

📚 The CDG State of the Art in 2022 📚

The words of Dr. Joana Poejo bring hope to the CDG community!

New information and new people interested in CDG means more opportunities for CDG research 💚

🔗 Read the Full Publication: https://t.co/MadmUc719h

#RareDiseases #CDGResearch

[World CDG Organization @worldCDG]

2024 CDG Scientific & Family Conference, USA

📷 Event Date: March 1-3
📷 Event Location: Mission Bay, San Diego, CA, USA

Highlights:
📷Scientific Sessions
📷Family Support Workshops
📷Networking Opportunities

Don't miss out! Register at https://t.co/Qu0WUx504c
#RareDiseaseDay

[World CDG Organization @worldCDG]

🗣️ "This is the most comprehensive review ever written on CDG. Every stakeholder will find it to her/his liking. A must read!"

Curious about out new publication?
🔗 Read the Full Publication: https://t.co/MadmUc6tjJ

#CDGResearch #ExpertOpinion

[World CDG Organization @worldCDG]

🌿Family Well-Being Series: Nurturing Mental Health
A journey to strengthen your family's resilience and happiness led by Vanessa, a CDG sibling and experienced coach on November 17, 24, and December 1 (5-1 PM 7isbon time)
Register by Oct 31 at [email protected]
#MentalHealth

[World CDG Organization @worldCDG]

New publication🗣️

➡️Congenital disorders of glycosylation (CDG): state of the art in 2022*in the prestigious journal Orphanet Journal of Rare Diseases🌟

📚View and download at https://t.co/MadmUc719h

[World CDG Organization @worldCDG]

🌟Nurturing Mental Health🌟

Let's dive into:
- Self-care
- Resilience
- Support strategies

3 sessions on November 17, 24, and December 1 from 5 to 7 PM (Lisbon time)

✨ Register today by emailing [email protected] Deadline: Oct 31

Limited fellowships available

#MentalHealth