4th WORLD
CONFERENCE on CDG 2019
The CDG road: from diagnosis to therapies!
"4th World Conference on Congenital Disorders of Glycosylation (CDG)
for families and professionals: United shaping the future for CDG"
Lisbon, Portugal - 26 and 27 July 2019.
“Nothing about us, without us”- James Charlton
|
The "World Conference on Congenital Disorders of Glycosylation (WCCDG) for Families and Professionals” is a biennial event fruitfully designed in collaboration with leading experts in the field of CDG: families and professionals work together to exchange knowledge, experiences, needs and perspectives.
The largest World event that gathers Congenital Disorders of Glycosylation (CDG) families and professionals. This event is designed to tackle the most important challenges facing the Congenital Disorders of Glycosylation (CDG) community! Hence, this year we want to try something new! The keynotes will be followed by Think Tanks were all the attendants will be able to discuss and comment what they have learned. To learn more about the First and Second World Conference on Congenital Disorders of Glycosylation for Families and Professionals please visit http://www.apcdg.com/education.html
|
Join the community!
|
WELCOME MESSAGE
Dear families, professionals, colleagues and friends:
It is with great pleasure that we invite you to the "4th World Conference on CDG - The CDG road: from diagnosis to therapies" planned to be held in Lisbon, Portugal - 26th and 27th July 2019.
This World Conference on CDG will provide a patient-tailored program which will highlight important information in the clinical and research area, as we progress to our goal of better care and improvement of the quality of life of people living with CDG and related metabolic rare diseases.
The Scientific-Medical and Family steering committees are sure that this unique event will be unforgettable and look forward to welcoming you to this Fourth World CDG conference.
We would like to express our thanks to all experts, professionals and families, for their outstanding contributions and in particular to the members of the committees for their contribution and helpful support. Likewise we would also like to express our appreciation to the speakers, as well as to the invited chairs for their careful preparation of the invited sessions.
CDG families together with professionals can make the difference!
Laying the groundwork for future stages of research and development based on family’s needs is the most rewarding aspect of this World Conference–boosting translational research will be a dream come true!
We are looking forward to seeing you in Lisbon!
With our warmest regards,
On behalf of the organizing committee.
It is with great pleasure that we invite you to the "4th World Conference on CDG - The CDG road: from diagnosis to therapies" planned to be held in Lisbon, Portugal - 26th and 27th July 2019.
This World Conference on CDG will provide a patient-tailored program which will highlight important information in the clinical and research area, as we progress to our goal of better care and improvement of the quality of life of people living with CDG and related metabolic rare diseases.
The Scientific-Medical and Family steering committees are sure that this unique event will be unforgettable and look forward to welcoming you to this Fourth World CDG conference.
We would like to express our thanks to all experts, professionals and families, for their outstanding contributions and in particular to the members of the committees for their contribution and helpful support. Likewise we would also like to express our appreciation to the speakers, as well as to the invited chairs for their careful preparation of the invited sessions.
CDG families together with professionals can make the difference!
Laying the groundwork for future stages of research and development based on family’s needs is the most rewarding aspect of this World Conference–boosting translational research will be a dream come true!
We are looking forward to seeing you in Lisbon!
With our warmest regards,
On behalf of the organizing committee.
4th World Conference on CDG PRELIMINARY AGENDA
|
***Press Release***
The preliminary agenda is available!
For next year’s conference we have focused on the several steps that lead to therapies: diagnosis, pre-clinical research, clinical trials and management therapies that are already available for the CDG Community. This is a diverse agenda which intends to bring together all the important stakeholders: Patients and Families, Researchers and Medical professionals and Pharmaceutical companies. In the name of the Portuguese CDG and Other Metabolic Rare Disorders Association (APCDG) we welcome all the CDG Community to participate in the 4th World Conference on Congenital Disorders of Glycosylation (CDG) for Families and Professionals ““The CDG road: from diagnosis to therapies”! |
|
| ||||
4th World Conference on CDG BOOKLET
Download the Conference Booklet to have all information regarding the Conference, venue, accommodation and preliminary agenda!
| wccdg_booklet_2019.pdf |
Family volunteer steering committee,
World Conference CDG for families and professionals, 26th - 27th July 2019 in Lisbon, Portugal
|
Sandra Pereira Pinto, Architect
Mother to Martin Advisory member at Portuguese Association CDG and Spanish CDG Association |
|
|
Tatiana Rijoff, PhD student at CERN
Mother to Camilla Founder of CDG Switzerland and member of CDG Italia |
Medical and Scientific steering committee,
World Conference CDG for families and professionals, 26th - 27th July 2019 in Lisbon, Portugal
Prof. Dirk Lefeber, PhD
The Netherlands |
Prof. David Cassiman, MD, PhD
Belgium |
|
Dr Dulce Quelhas
Portugal |
Dr Santos Pimentel, MD
Portugal |
|
Dr Stephanie Grunewald, MD, PhD
United Kingdom |
Dr Mercedes Serrano, MD, PhD
Spain |
***Important Announcements***
|
The WCCDG final dates are out!
Start planning your trip! |
The registrations for the WCCDG are open!
Start planning your trip! |
|
|
|
|
|
If you have any question or doubts, please contact the organizing committee at
worldcdgconference2019@gmail.com
worldcdgconference2019@gmail.com
Venue
The 4th World Conference on CDG will be held at the Auditorium Pf Simões dos Santos at Faculty of Dental Medicine of the University of Lisbon, Cidade Universitária, 1649-003, Lisbon.
|
|
Who will be the World Conference on CDG Speakers?
Information about the 4th World Conference on CDG on 26-27th July 2019 in Lisbon (Portugal), will be available shortly!
The World Conference on CDG for families and professionals: brings families and professionals together from accross the world to accelerate CDG patient-centered research. The ultimate goal: To change the course of CDG, and find cures in our lifetime.
Poster submission
|
In this year's edition we will have posters!
We want to attract young researchers and have them present their work in the CDG field. If you would like to submit you poster abstract go HERE! |
|
Organization
Initiated and organized by the Portuguese Association for CDG – APCDG
And made possible by the CDG families and professionals community worldwide.
To know more about the CDG patient associations and patients advocates around the world go HERE.
To know more about the CDG patient associations and patients advocates around the world go HERE.
in collaboration with the European Reference Network for Rare Metabolic Diseases - MetabERN (know more HERE)
AND
in collaboration with the Applied Molecular Biosciences Unit (UCIBIO) and the Faculty of Sciences and Technology of the Nova University of Lisbon (FCT-UNL) - know more HERE.
|
|
AND
with the endorsement of Portuguese Society for Metabolic Disorders (SPDM) and the Society for the Study of Inborn Errors of Metabolism (SSIEM) - know more HERE and HERE.
|
|
VOLUNTEERS
Want to be part of this unique event?
You can donate a little bit of your time and register as a volunteer HERE!
You can donate a little bit of your time and register as a volunteer HERE!
Online Registrations will be open from 28th February to 30th June 2019 for FAMILIES!
Online Registrations will be open from 28th February to 16th May 2019 for PROFESSIONALS!
You can find the registration forms for FAMILIES and PROFESSIONALS HERE!
The "World Conference on Congenital Disorders of Glycosylation for Families and Professionals" toolkit to boost awareness
How you can get involved in the "World Conference on Congenital Disorders of Glycosylation for Families and Professionals" activities?
STEPS:
Follow the updated information on http://www.apcdg.com/events.html
- Join us on Facebook and be updated on the "4th World Conference on CDG - The CDG road: from diagnosis to therapies" will be held in Lisbon, Portugal - 26 and 27 July 2019.
- When the event is close, use the World Conference Symbol on your Facebook profile picture & Twitter page !
- Change your Facebook cover to the World Conference on CDG Facebook cover (see toolkit below)
- Disseminate the infographic dedicated to explain the important benefits of this gathering event (see toolkit below).
- Be a volunteer! We need volunteers to assist in several activities. For detailed information please visit http://www.apcdg.com/get-involved1.html
Follow the updated information on http://www.apcdg.com/events.html
Symbol "World Conference on Congenital Disorders of Glycosylation for Families and Professionals"
|
The "World Conference on Congenital Disorders of Glycosylation for Families and Professionals" Symbol was selected by our World CDG community through a votation process in 2015.
It recognizes the continuous efforts that families and professionals, are doing united to boost research. The urgent goal: to achieve a better quality of life for our CDG children and adults in our lifetime. It is our hope that the logo will make the conference easily recognizable and memorable at the international level. Importantly, it will boost visibility for CDG and its community needs. |
Infographic "World Conference on Congenital Disorders of Glycosylation for Families and Professionals"
|
This event was created and initiated by the Portuguese Association for CDG and related Rare Metabolic Diseases (APCDG-DMR) with four main objectives:
To learn more about the First and Second World Conference on Congenital Disorders of Glycosylation for Families and Professionals please visit http://www.apcdg.com/education.html |
Facebook cover "World Conference on Congenital Disorders of Glycosylation for Families and Professionals"
When the event is close, change your Facebook cover to the World Conference on CDG Facebook cover. You just have to save one of the covers available below.
|
|
Email signature
When the event is close, use our Email signature to spread the word about the World Conference on CDG. You just have to save one of the emails signature available below.
|
|
Video
Watch and Share the video that summarizes the best moments lived in the Second World Conference on CDG. It gives a simple, yet informative explanation of what means your attendance during the next World Conference on CDG.
|
|
If you wish to learn on how to boost World CDG Awareness, visit our World CDG Awareness toolkit available at http://www.apcdg.com/awareness.html
The World Conference on CDG for families and professionals is supported by the generosity of the following organizations
Gold generosity
|
|
Silver generosity
|
Bronze generosity
|
World Conference on CDG for families and professionals is an initiative of the Portuguese Association for CDG (APCDG)
Newsletter
|
|
