World CDG Organization

📣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.

#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

🌟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 worldcdg.org/awareness/worl… #StandUnited4CDG #CDGGoGreen

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 bit.ly/3LsjIkD #WorldCDGDay #StandUnited4CDG

💚 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 bit.ly/3NbMtof #StandUnited4CDG #CDGGoGreen

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

#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 🌈 👉 bit.ly/ResilienceCDG

🦓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 bit.ly/irdirctaskforce

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

🌍✨ 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 bit.ly/6thWCCDGReport #CDGCommunity #CDGAdvocacy

✨ 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 🥂

The Rare Disease Day 2024 official video gathers worlwide stories and experiences of the rare disease community and is available in 60 languages! a027.short.gy/FwvUfj Lets come together leading up to Rare Disease Day 29 Feb 2024 Hit share and raise awareness! #RareDiseaseDay

📢The #6thWCCDG report is out! 📘 Dive into the session summaries, insights and breakthroughs at bit.ly/6thWCCDGReport 🚀 Let's amplify awareness and support for CDG. Share the report, join the conversation, and be part of the movement! 🤝 #CDGAwareness #StandTogether4CDG

🎙️2🆕#JIMDpodcast episodes! 🎧Shortcast: PIGO-CDG: A case study, phenotypic expansion, lit review & nosological considerations feat Dr Starosta✨spoti.fi/47KFeuL 🎧CAD Deficiency: Beyond the genetics feat Dr Wortmann, Dr Freeze & Dr Ramón-Maiques spoti.fi/49ya4bm

📚 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: bit.ly/CDGstateart2022 #RareDiseases #CDGResearch

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 bit.ly/3sch8K8 #RareDiseaseDay

🗣️ "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: bit.ly/CDGstateart2022 #CDGResearch #ExpertOpinion

🌿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 wcdgo@worldcdg.org #MentalHealth

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 bit.ly/CDGstateart2022

🌟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 wcdgo@worldcdg.org Deadline: Oct 31 Limited fellowships available #MentalHealth