May 16th Panelist

The conference is important to bring families and researchers together. With this, the research gains in practical basis and the families gain in new knowledge.

I believe the world CDG congress is the only way to raise awareness of all these rare diseases, vital for networking & information sharing, and to begin research and ultimately finding cures for our rare children all over the world 🌎

I'd love to take part in the conference, it's a welcome opportunity to learn more about CDG. Listening to how other families deal with their own issues and experiences can help me reduce the impact this illness has on our daily life

The World CDG Congress is the opportunity for patients, professionals and industry to come together to share knowledge, experiences, and discuss common issues of patients living with CDG. Through this unique platform, an inclusive collaborative infrastructure is developed which enables medical professional and families to unite and enhance CDG research, knowledge, and therapeutic treatment strategies for our global community

The World CDG Conference is an amazing opportunity to partner with various stakeholders to identify solutions with high impact toward meaningfully improving CDG patient health.

Being a part of this conference gives a voice to families like mine that have struggled to be heard and understood medically because this disorder is so rare. Having lost a child to PIGN, were a bit different than most families because Holly’s life was nothing but a fight for care and credibility, because of the rarity of her (then unknown) disorder.

Sobre la pregunta: ¿Por qué un congreso mundial es importante para familias y profesionales? Pues básicamente lo que se me ocurre es porque al ser una enfermedad tan minoritaria la única forma de unir fuerzas es a través de los conocimientos y experiencias repartidos a lo largo del planeta. Más allá de nuestras nacionalidades y culturas es lo que nos une, un enigma y una lucha por el bienestar de nuestros seres queridos. Al reunirnos y debatir propuestas nos sentimos menos sol@s y más conectad@s a nuestra humanidad compartida, lo cual se expresa a través de la vulnerabilidad que supone cuidar y crecer de esta enfermedad genética. También creo que nos ayuda a aprender más unas personas de otras y unas familias de otras porque sabemos que la tarea de cuidar a las personas con CDG nunca termina y necesitamos todas las herramientas posibles para seguir adelante. También porque las personas con CDG necesitan sentir que son valiosas, que sus metas son importantes y que pueden alcanzar el prefeito grado de autonomía que les sea posible. Bueno, me imagino que esto va más allá de un congreso y tiene más que ver con tejer una red de apoyo.

The CDG World Alliance is a paramount example of the real meaning of patient-centric research on the rare diseases field. My professional commitment is to ensure that patients are at the heart of research. It will be a pleasure to share my experience in your event but especially learn from the CDG Community. Together we are stronger.

Congenital Disorders of Glycosylation Program for Diagnosis and Research in Latin American countries.

With great effort, we organized the first (2010) and second (2014) Latin American CDG symposiums. Almost a hundred attendants and referential professors enjoyed an event that motivated us to continue growing and sharing our knowledge and experience. Now, we are engaging and improving our clinical and technical capacities, including a database of referral centers (national and abroad), looking for analytical equipment for more sensitive CDG confirmatory tests. We are now in a new virtual community that needs a global project targeting new therapies for CDG patients to improve their life.

The World Congress on Congenital Glycosylation Disorders (CDG) is a great and unique opportunity to bring together people from different fields, all interested in providing better knowledge about the underlying molecular bases and diagnostic tools for this group of rare diseases, which will allow the development of better therapeutic approaches. In particular, my research group is interested in understanding the involvement of ion channels in the development of different neurological disorders associated with CDG, with the main focus on cerebellar syndrome and stroke-like episodes, in order to provide new therapeutic targets for these serious neurological alterations.

The CDG conference is a place where all the great minds and the big hearts of families, caregivers and researchers come together to provide and exchange invaluable information and support for our CDG community, which helps us navigate possible treatments and supports to continue to care for people with CDG ♥

The conference is important to me because:

1: I am able to connect with other families and professionals from around the world and not feel so isolated. Thanks to attending the 1st World Conference and the connections I made I have been able to find other families with the same subtype as Jojo and Abby.

2: I am proud to be able to share as much as I can about the more rare subtype;  Type ii MAN1B1 and also what it is like to raise two children with CDG who develop differently. 

3: I would like to acknowledge all our/the amazing siblings who grow up alongside our CDG children and what amazing human beings they are.

The conference is important for people who are involved with CDG to meet, share their experiences, share their knowledge and support each other

As a parent of a child with CDG this conference is a great opportunity to meet a unique blend of worldwide CDG families and worldwide CDG healthcare professionals.

The World Conference is the perfect environment for families, medical professionals, and companies to get together to learn from each other and find even more ways to collaborate

It will be an honor to participate in the 5th World CDG Congress. As a geneticist and researcher in the area, I would like to give voice to the needs and achievements of the Latin American CDG community. The difficulties are still great, and education is essential to expand access to diagnosis and treatment.

As long as CDG are severe diseases mostly without treatments, conferences remain very important tools to raise awareness for CDG, to bring families together to support each other, and to bring scientists together to learn what it means for the patients and the families to have a CDG thus increasing their motivation to devise efficient treatments.

O congresso é muito esperado para as famílias, afinal pouco se sabe sobre CDG, e precisamos tornar a síndrome conhecida mundialmente. Esperança por tratamentos é o que temos!

This conference is so important to our families and others because it provides an opportunity to share knowledge and connect with others. Both of these are critically important with a rare diagnosis as this type of information and connections aren't readily available.

For me, this is important as it helps me to understand my son's condition better and to learn more about it, while doing the best I can as a parent to equip my son  for the future.

The cdg meeting, and community in general, is very important to me, because this is a platform where we can help each other in every way.

The 5th World CDG congress 2021 is a very important event for all of us-specialists and families affected of this group of increasing in number and complexity metabolic disorders. I consider that everywhere the diagnostics is difficult and expensive and the physicians who care for the children with rare disorders are few. I spent years of dedication to Congenital Disorders of Glycosylation and my heart is full of love and sympathy for the children. I feel the confidence of my colleagues and the responsibility to continue my work and support the CDG society even in unfavorable circumstances. 

CDG: Juntos marcamos la diferencia. Por los pacientes, las familias y por todos!!! #StandUnited4CDG!

Why do I think these CDG conferences are important? These CDG World Conferences are a unique way to combine sharing global medical/physical knowledge and results as well as experiences and needs of parents and other caretakers involved with CDG children and adults. As a mother of a 10-year old daughter with CDG 1-A I'm very happy and honoured to participate in the panel discussion.

Ces conférences ont une forte importance, ça a été l’occasion lors de la 2ème à Lyon de rencontrer pour la première fois d’autres parents concernés par le CDG et surtout de comprendre ce qu’est ce syndrome, en ayant la chance de pouvoir échanger en direct avec des professionnels.

The conference is a great moment that unifies and connects families and all professions aiming to better understand and manage CDG syndrome and to restore hope for a therapy!

For me, this first participation is the first step in a journey that will help my son get the life and future he deserves. World CDG Day is the place where scientific and families can share, bond and make everything happen.

"The meaning of life is to find your gift. The purpose of life is to give it away." - W. Shakespeare

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.

Drug development, particularly in rare diseases, is a huge TEAM effort – it requires the engagement of companies, researchers, clinicians and, most importantly, patients and their families and caretakers – and this conference is a unique and special venue for that engagement.

I believe that we have the potentials to help our CDG families and the networking between us is the key for that.

World CDG Conference brings health care professionals and families with CDG together to share experiences and guide physicians taking care of families with CDG for precision medicine.

World CDG Conference will provide me ample knowledge about many faces of CDG and privilege to meet families with CDG.

The World CDG Conference is a unique and dynamic event where professionals and families can share experiences and thoughts to advance CDG research.

The World CDG Conference is a unique and dynamic event where professionals and families can share experiences and thoughts to advance CDG research.

The CDG conference is of utmost importance as an instrument to access relevant information on this syndrome and its impact on the quality of life of patients and their families.

Nowadays the development of new technologies, such as genomic analysis by means of next generation sequencing (NGS) and other “omics technologies”, has boosted the molecular understanding and diagnosis of several diseases. Thus, as expert in multi-omics approach development and data analysis, I will contribute with the bioinformatic point of view to the discussions raised during the session.

The 5th World CDG Congress 2021 brings together individuals with CDG and scientist trying to find cure for them. Being a scientist, learning about the needs of individuals and families with CDG has been a great inspiration to and driver of our scientific endeavors.

It is my pleasure to attend the 5 world CDG conference as a parent of a CDG (1a) child and founder of CDG Georgia. This is the first time that Georgia has been so actively involved in this process. 

Due to the fact that many people in Georgia lack information about this condition, our aim is to raise awareness about CDG in our country , that will help our geneticist and pediatricians to correctly identify the target condition in a timely manner. The technology is advancing in terms of both symptomatic treatment and rehabilitation, as well as clinical trials and I hope that very soon our children will have a medicine and an effective treatment that will help to significantly improve their quality of life.

It is fantastic to meet from one side the CDG experts, (wonderful professionals and human being who care for our families)  and from the other side the other families and feel like a big fantastic family.

World Conference on CDG creates the perfect environment to join the forces of the different stakeholders involved in the discovery and development of future therapies for CDG.

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.