6th World Conference on CDG

The 6th World Conference on CDG includes novelties aimed at securing global participation, thanks to 3 educational tracks:

Online pre-conference sessions:

The "World Think Metabolic, Think CDG Academy" is composed of recorded sessions delivered in video format. These videos are delivered in English with a captioning option. Thus, you can access relevant information about CDG advances at your own pace and convenience. In addition, you acquire knowledge that will help you to get highly involved during the in-person World Conference on CDG as well as in your advocacy activities and CDG daily care and management. These sessions will be available during June 2023 and are intended for people living with CDG, their family members, academia, medical doctors, and the industry. It aims to provide stakeholders with the knowledge and skills needed to become CDG research and drug development experts. It will be of great help to navigate along the overall sessions that will be delivered during the 6th World Conference on CDG.

In-Person events held in Caparica, Portugal, at NOVA School of Science and Technology, FCT NOVA include: 

• The “First World CDG Advocacy, Policy and Leadership Academy” offers in-person sessions. It is tailored for leaders of CDG patient groups their advocates and any family member who wants to upskill to become successful advocates.
• The “6th World Conference on CDG” offers in-person sessions intended for all CDG community. Simultaneous interpretation from English to Portuguese and from English to Spanish will be offered. The 6th World Conference on CDG will also count with Online Transmission due to many requests from the professional and CDG families community, and to guarantee that up-to-date information and the latest CDG advances reaches all interested people around the world. The online transmission that participants will be able to see and listen to what is happening LIVE in the in-person event at the same time as the rest of the participants and will be able to use simultaneous Interpretations from English to Portuguese or Spanish. However, participants are unable to interact with other participants. Note: you still need to register to access the online transmission. If you have questions, write us.

Don’t forget this is your chance to gain direct access to the people fighting daily for children and adults like yours. Perhaps, most importantly, it will give you the opportunity to meet, exchange and reunite with families on a similar journey as you. There is incredible power and strength in connecting. 

Visit the different web pages prepared to give you an overview devoted to this event.

#StandUnited4CDG

“One of the marvellous things about community is that it enables us to welcome and help people in a way we couldn't as individuals." 
by Jean Vanier
 

Why should I attend?

This event fosters and strengthens community-centric activities and programs that empower all stakeholders to promote and speed up CDG drug development with a collaborative spirit. The Conference aspires to build a collaborative research and drug development agenda strategy to help CDG families and professionals accomplish meaningful goals. 

By attending this event, you will 

• Have the opportunity to have direct contact, establish dialogue and engage in meaningful discussions with CDG experts (families and professionals)
• Boost your knowledge and information exchange, contributing to your empowerment
• Gaining insight into breakthroughs and state-of-the-art data related to the CDG field
• Enable the increase of your network, by forging partnerships with stakeholders
• Have the chance to be motivated and inspired by brave people
• Shape basic and applied research based on CDG community concerns and needs
• Identify and assess CDG unmet needs and urgent challenges
• Attend presentations given by international and highly qualified CDG professionals
• Raise awareness for CDG at a global level
• Foment global CDG community union and companionship  
• Promote translational research

Recent research by CDG & Allies revealed that CDG families face disparities in diagnosis, care, accessing information, and therapies due to funding, ethical, and legislative difficulties. Overall findings suggest establishing and strengthening a community-centric strategy for CDG drug development that supports active engagement from all stakeholders. 

Who will be there?

The panelist is formed by families and professionals from many different countries.  To find out more about the panelist, head to the section dedicated to the Program.  

Initiated and organised by 

The Portuguese Association for CDG (APCDG) and CDG & Allies. In partnership with our CDG community. With the generous support of donors. To discover more, head to the Support section of this website. 

CDG & Allies - PPAIN is the community-centric international research network for CDG based at NOVA School of Science and Technology, FCT NOVA, Caparica, Portugal. For more information, visit here.  
#StandUnited4CDG

Authors

Vanessa Ferreira (Senior community-centric researcher, and Global Patient Advocacy, CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).

Revisors 

Ana Verde (collaborator at CDG & Allies FCT, NOVA University). 

Content managers

Marisa Godinho (collaborator at CDG & Allies FCT, NOVA University).