World CDG Organization (WCDGO) is the unified voice of people living with Congenital Disorders of Glycosylation (CDG).
Joined March 2016
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19 Jul 2024
๐ฃFirst data shared from the FCDGC Natural History Study ๐ฃ
Check the most recent findings from our brilliant clinical researchers which looked at a group of 2๏ธโฃ8๏ธโฃ0๏ธโฃ individuals with CDG diagnoses.
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 ๐authors.elsevier.com/c/1jMLiโฆ
#cdg
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16 May 2024
#WorldCDGDay ๐
Today, we stand together to shine a light on CDG๐๏ธ
Let's raise awareness and support for those affected by CDG. Letโs spread love and stand tall together! Share your green colours, awareness activities, and your hopes for the future!
#StandUnited4CDG #CDGGoGreen
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13 May 2024
๐3 DAYS left to #WorldCDGDay๐
Join us in spreading awareness and support for those affected by CDG. Together, we can make a difference! ๐๐๐
๐ Still wondering how to get involved? Find out more at worldcdg.org/awareness/worldโฆ
#StandUnited4CDG #CDGGoGreen
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5 May 2024
Itโs โฐ for the #CDGGoGreen movement ๐
๐ Change your Social Media banner and profile picture to raise awareness for CDG
โก๏ธ Share this post and tag three friends to join us ! Together we are stronger! ๐ช๐ซ
Get them at bit.ly/3LsjIkD
#WorldCDGDay #StandUnited4CDG
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3 May 2024
๐ 2 weeks to go to #WorldCDGDay ๐
Are you ready to raise awareness on May 16th? ๐ช
๐ Prepare now! Explore and use the vast list of materials, available in several languages ๐
Access it now at bit.ly/3NbMtof
#StandUnited4CDG #CDGGoGreen
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28 Apr 2024
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 ๐
#RareDisease #MentalHeath
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26 Apr 2024
#Resilience in #CDG โ
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 ๐
๐ bit.ly/ResilienceCDG
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21 Apr 2024
๐ฆ๐๐ต๐ฎ๐บ๐ฝ๐ถ๐ผ๐ป๐ถ๐ป๐ด ๐ฅ๐ฎ๐ฟ๐ฒ ๐๐ถ๐๐ฒ๐ฎ๐๐ฒs๐!
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." ๐
๐More information at bit.ly/irdirctaskforce
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19 Apr 2024
4 weeks to go!๐ฃ
May 16 is #WorldCDGDay โก๏ธ time to start painting the World ๐๐๐๐๐! ๐ ๐ ๐
Join the #CDGGoGreen campaign that encourages people to use green on May 16th, to show support for children and adults affected with CDG ๐
#LetsComeTogether
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6 Jan 2024
๐โจ Voices of CDG Families and Advocatesโจ๐
๐ฃ 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
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1 Jan 2024
โจ Happy New Year โจ
Let's welcome the new year with open hearts and a renewed sense of hope๐ 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 ๐ฅ
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30 Dec 2023
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
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1 Dec 2023
๐ขThe #6thWCCDG report is out! ๐ Dive into the session summaries, insights and breakthroughs at bit.ly/6thWCCDGReport ๐
Let's amplify awareness and support for CDG. Share the report, join the conversation, and be part of the movement! ๐ค
#CDGAwareness #StandTogether4CDG
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12 Nov 2023
๐๏ธ2๐#JIMDpodcast episodes!
๐งShortcast: PIGO-CDG: A case study, phenotypic expansion, lit review & nosological considerations feat Dr Starostaโจspoti.fi/47KFeuL
๐งCAD Deficiency: Beyond the genetics feat Dr Wortmann, Dr Freeze & Dr Ramรณn-Maiques spoti.fi/49ya4bm
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10 Nov 2023
๐ The CDG State of the Art in 2022 ๐
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 ๐
๐ Read the Full Publication: bit.ly/CDGstateart2022
#RareDiseases #CDGResearch
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5 Nov 2023
2024 CDG Scientific & Family Conference, USA
๐ท Event Date: March 1-3
๐ท Event Location: Mission Bay, San Diego, CA, USA
Highlights:
๐ทScientific Sessions
๐ทFamily Support Workshops
๐ทNetworking Opportunities
Don't miss out! Register at bit.ly/3sch8K8
#RareDiseaseDay
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3 Nov 2023
๐ฃ๏ธ "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?
๐ Read the Full Publication: bit.ly/CDGstateart2022
#CDGResearch #ExpertOpinion
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29 Oct 2023
๐ฟFamily 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
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28 Oct 2023
New publication๐ฃ๏ธ
โก๏ธCongenital disorders of glycosylation (CDG): state of the art in 2022*in the prestigious journal Orphanet Journal of Rare Diseases๐
๐View and download at bit.ly/CDGstateart2022
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27 Oct 2023
๐Nurturing Mental Health๐
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)
โจ Register today by emailing wcdgo@worldcdg.org Deadline: Oct 31
Limited fellowships available
#MentalHealth
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