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May 15th Panelist

Meet our Prestigious Panelist

Alison Slade

Alison Slade

Andrew C. Edmondson

Andrew C. Edmondson

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.

Carlota Pascoal

Carlota Pascoal

Attending the World Conference on CDG is such a great opportunity to have access to the most up-to-date information on CDG directly from the Experts in the field as well as connect with and learn from other families in a sharing, friendly environment.

Catarina Teixeira

Catarina Teixeira

For me, this conference is particularly important because it will give me the opportunity to learn more deeply about different aspects of CDG, to discover what is being done for the patients and their families, and what is still not being dealt with that would be important to invest in. I think it will be a great opportunity to meet the work that is being done around the world, exchange knowledge and develop a deeper understanding of these diseases.

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Christian Thiel

The World CDG Congress mediates the encounter between physicians, basic researchers and patients and encourages essential exchange among each other

Claudia Graetsch

Claudia Graetsch

The CDG World conference is a unique and incredible experience for both medical professionals and rare disease families to come together and share experiences, gain knowledge and to feel part of a community.

Dafne Horowitz

Dafne Horowitz

Having a meeting where families, physicians and scientists meet is a unique opportunity to join forces, learn, exchange ideas and to, ultimately, lead to a better life for all those touched by CDGs.

Daniel Lewi

Daniel Lewi

Daniel Lewi has first-hand experience of caring for a family member with a rare disease after his daughter was diagnosed with Tay-Sachs in 2011. As the founder of the rare disease patient organisation The Cure & Action for Tay-Sachs (CATS) Foundation, he is fully aware of the challenges that many families face when taking part in clinical trials. In addition, he is the Founder and Chairman of the European Tay-Sachs and Sandhoff Charity Consortium (ETSCC) which has brought together all the European charities that support patients. This has enabled the community to work together and support research on a regional, national and international level.

David Coman

David Coman

Information and knowledge is power, and our CDG families are superhero's.

Eleonora Passeri

Eleonora Passeri

The World CDG conference is an international leading event that truly brings together the patient and the scientific communities enabling them to collaborate as peers

Elodie Lebrondochel

Elodie Lebrondochel

2021 will be the 3rd World Conference on CDG in my life. I remember how motivated in my research experiments I was, after the first conference I attended as a young PhD student. I am aware that gathering families, clinicians, researchers... is unique as it is so rare in the field. I am lucky to be able to live it once again and I am more than honoured to be there as a panellist for the 2021 edition

Ethan Perlstein

Ethan Perlstein

I'm honored to be a part of the CDG researcher community

Eva Morava

Eva Morava

Without getting patients, parents, clinicians and scientist together we won’t be able to cure CDG.

Gabriel Ribeiro

Gabriel Ribeiro

Giuseppina Andreotti

Giuseppina Andreotti

It is important to attend the World Conference because there is no better way to create a community with common goals.

Helen Shapiro

Helen Shapiro

As a clinical research professional, it is crucial to interact with your patients and their communities to determine what matters to them and to keep them in mind every step of the way during clinical development.

Holly Carmichael

Holly Carmichael

The connections made through the CDG World Conference are invaluable. Learning and collaborating with the top minds in CDG research and care is so critical as we move towards advancement of treatments and cures. When you meet with other CDG families you are instantly bonded and connected for life. Truly an amazing experience

Horacio Plotkin

Horacio Plotkin

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

Jenny Tupper

Jenny Tupper

The World CDG Congress is a valuable opportunity to meet and learn from each other about this rare condition, be it through clinical expertise or lived experience.

Konstantin Feinberg

Konstantin Feinberg

I am a neuroscientist. I am also a father of Ethan, 6y.o. boy with CDG1a. Dealing with Ethan’s problem has become our daily routine. Our physical and mental afford dedicated to improving Ethan’s functionality and making his life easier in general are always associated with a feel of guilt that we do not do enough. From my professional perspective I work on establishing a research dealing with CDG - associated neuropathy. Since, CDG is a very young and mostly unknown group of disorders, there is a highest importance in communication between families and scientists, when we could share our personal experiences and new ideas, and discoveries to learn about multiple practical and mental aspects, as well as potentially developing therapeutic approaches, respectively. I find  this and other CDG - dedicated conferences crucial for supporting this unique community and achieving our ultimate goal to help our beloved ones to live maximally possible fulfilling life.

 

Kristin Mikarts

Kristin Mikarts

I look forward to connecting with other families and learning more about research and initiatives regarding CDG. 


 

Larissa Vieira

Larissa Vieira

CDG world Conference is important because it connects families and professionals promoting an exchange of experiences and knowledge update.

Lorenzo Lachi

Lorenzo Lachi

I've known CDG family in 2015 in Lyon. From that moment we feel stronger and less alone.

 

Marta Vazquez

Marta Vazquez


CDG patients are spread all over the world and for this reason it is very important to have a place to show our unity. We are very different people but in this fight we are one against CDG. Unity makes strength.

Nikki Zimmerman

Nikki Zimmerman


This conference to me is important because any opportunity to learn more to help not only my sons quality of life but also all the other effected by CDG now and if the further.  Knowledge is power.  

Rita Barone

Rita Barone


The CDG World Conference for Families and Professionals is a unique context that unites Families and Professionals from around the world with the aim of sharing the proxy experience with cutting-edge research in the field.

Rita Francisco

Rita Francisco


This conference is a unique and safe forum. A platform where professionals and families can openly talk and learn from each other!

Sandra Brasil

Sandra Brasil

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

Sandra Brasil

Sandra Brasil


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

Stacey Vogele

Stacey Vogele


As a parent of an older child, I am still a relatively newcomer to the CDG community.  We received a final confirmation that our daughter had CDG 1 C a month before she turned 19 years old (in 2020).  I have participated in Facebook and the online videos from other CDG conferences and I have learned so much from the information that is shared.  I am extremely grateful for the work that the organization is doing to help spread awareness of the CDG disorders, and to help inform the medical care for our childrens’ unique needs.  Although each type of CDG may not have large numbers of patients, together, we are an important group and collaboration around the globe is immensely valuable.

Vanessa Ferreira

Vanessa Ferreira

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.

Yolanda Scott

Yolanda Scott

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Page modified at Friday, March 19, 2021 - 02:45