As the older sister of someone with CDG, I want to participate in this panel to discuss how we can reduce the isolation of families and CDG patients in clinical and psychological/social settings. I am an assistant professor of political economy who works on inequality of access, in large part informed by my family's experience of structural inequalities facing disabled Americans
We attended our first conference when Danielle was around 4 years old. At that time, she had significant health issues and we had so many questions about what her future would hold. We got to meet other families with older children, who were paving the way for the younger ones. It gave us hope. We were fortunate to attend the conference in San Diego in February 2020. It had been 16 years since our previous conference and we were amazed at all of the progress that had been made with identifying the different subtypes of CDG, as well as the therapies and research that were going on world wide. But, once again, it was the dialogue with other families about the day-to-day challenges that we face that we learned the most from. You get to know the families and you are excited to celebrate all of those little milestones collectively as a global family. The conferences allows for that bonding and sharing.
My hope is that the World CDG Conference will bring hope and refreshment for caregivers in a year that has left us all exhausted and worried.
The World CDG congress is a time to share, learn and understand CDG needs and challenges. It is a special moment to create a link with the CDG community.
I consider the conference relevant to bring together families, physicians and researchers, and to identify the most challenging problems patients face and, as a researcher, to focus on finding solutions.
Dorinda da Silva
The World CDG Congress is a unique event that updates you about everything happening in the CDG field.
The interaction between scientist, patients and families is a motivating engine driving our research and strongly stimulating our scientific activity.
The conference is important to me because CDG is pretty rare—through these events, I can share my knowledge from my experiences with my son as well as gain knowledge from others that I can use towards his care.
Personally the CDG conference means the world to me as any new information and sharing of this rare disease will help in the process of making people with CDG including my little girl have a higher and healthier quality of life.
The World CDG Congress is an important platform for the CDG community to come together and exchange knowledge, raise awareness and advance research on CDG.
María Eugenia de la Morena Barrio
Joining our knowledge is the only way to help patients, scientists and phisicians. Sharing and communicating it in the World CDG Congress the best way.
The World CDG Conference is the meeting of the CDG needs: patients, researchers, and clinicians join their forces and exchange opinions and necessities. It is crucial for the growth of the CDG Community!
Control, solution and progress. Going always forward, because everything is possible.
The World CDG Congress connects families and professionals, building awareness of the CDG experience, affirming scientific and medical professionals in their efforts to understand CDG, and giving much-needed hope to CDG families about their children's future quality of life.
As a parent of a recently diagnosed child with CDG-1a, I am interested in gaining and sharing knowledge on how to provide the best opportunities and support for our loved ones in the CDG community.
I would like to contribute because one of my goals is to improve the quality of life of CDG patients.
The World CDG Congress is a global response to a disease that knows no frontiers.
The World CDG conference is much more than a conference! It is a family reunion, where everybody feels welcome. It gives us a unique opportunity to meet people, putting CDG families and patients, and professionals altogether, at the same level. We will all get embraced and have the opportunity to expand our knowledge and learn beyond that. It surely enhances our own work or daily life. I am looking forwards to this memorable event.
It is my great pleasure to attend the 5th CDG congress.
As the consanguinity rate in my country is high, I guess we might have many undiagnosed CDG patients in Iran because we also do not have any specific test to find them and most of our physicians are not familiar with this group of metabolic disorders.
This conference is a unique and safe forum. A platform where professionals and families can openly talk and learn from each other!
As I am a Pediatric Neurologist and I have to handle patients with different metabolic diseases, participating in this conference would boost my experience and would have great impact on gaining huge knowledge in order to provide early detection, relevant treatment and management of children with CDG and associated metabolic disorders. It would benefit not only my professional growth, but would also improve the condition of the patients by making accessible the methods you would share with us.
The 5th World Conference on CDG is the largest, most complete and resourceful, international conference focused entirely on CDG. It is the highest expression of love. The content is delivered in a patient-friendly style that can be understood by non-specialist audiences. Our wish is to help families to engage with clinicians and researchers more effectively and ensure that families are actively included in the healthcare decisions.
For me personally, it puts hope into my heart. It puts a lot of hope into my heart to know that research into SSR4-CDG and other less-known CDGs will be moving along. I believe it can improve the quality of my son's life as well as that of many others. I am grateful for this.
On a bigger scale, I think it is extremely important to promote knowledge of CDG and connect researchers, doctors and families to collect and share information and support each other. The belief that it could change for the better the life of my son, as well as that of many others, gives me more strength to cope with present difficulties.
The conferences held for CDG families are such an invaluable source of information as well as connection for all involved. I will never forget our first conference in lndianapolis Indiana many years ago. ln person conversations with other families and professional specialists helped us to have a deeper understanding of the disorder and how families deal with the challenges that are involved. I very much look forward to connecting once again.
Knowledge is wisdom and sharing is caring.
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