CDG and Allies and APCDG to present posters about therapeutic research and lay language resources driven by CDG families in collaboration with key stakeholders at European Conference on Rare Diseases (ECDR) 2022!

CDG

Lisbon, Portugal 27 June 2022 - The CDG & Allies and APCDG announces presentations at the European Conference on Rare Diseases and Orphan Products (2022 ECRD) of results dedicated to the study of the Immunological involvement in Congenital Disorders of Glycosylation (CDG) using a community-centric approach and several posters dedicated to the current works focused to create resources in lay language, and to make information centralized thanks to https://worldcdg.org/, a web based platform co-created with and by CDG families, to families and related stakeholders.

From 27 June to 1 July, the 11th edition of the European Conference on Rare Diseases and Orphan Products, will mirror current political opportunities and policy milestones and present an opportunity to hear from European and international institutions and key opinion leaders working in the field. This is an opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives. Those interested can Register now for ECRD 2022. 

What’s so unique about ECRD 2022?

  • Over 250+ innovative posters presenting latest research and projects on rare diseases
  • High-level policy discussions and debates
  • Prominent opinion leaders, policy makers, researchers and patient advocates from all across the world, including dedicated thought leader sessions to tackle some of the biggest rare disease challenges

The data will be shared at the ECDR 2022 Conference as follows:

  • Boosting insights in a rare disease with a community-driven approach: the immunopathology in PMM2-CDG (Reference number: 5 )
  • Empowering CDG families and professionals with an arsenal of educational resources, (Reference number: 160)
  • A grassroots effort to build community practical tools, of the International clinical guidelines for the management of phosphomannomutase 2-congenital disorders of glycosylation (PMM2-CDG) (Reference number: 161)
  • CDG & Allies: Reducing bottlenecks to accelerate access to centralized information about CDG with a community centric biomedical resources approach (Reference number: 162)

About CDG & Allies 

CDG & Allies is a family-driven international research network dedicated to CDG and related diseases, based at FCT, NOVA University. For more information, please consult: https://www.researchcdg.com/

About the World Organization for Congenital Disorders of Glycosylation

The World Organization for Congenital Disorders of Glycosylation (WCDGO) is the unified voice of people living with CDG. It aims to transform the world's understanding of CDG and advocate for those living with CDG. WCDGOhas a strong, common voice with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for CDG. WCDGOis led and operated on a volunteer basis by the CDG & Allies . For more information, please consult: https://worldcdg.org/ 

Stay tuned and subscribe to our newsletter: https://worldcdg.org/newsletter-subscription 

About APCDG

The Portuguese Association for Congenital Disorders of Glycosylation and other Rare Metabolic Diseases (APCDG) is a non-profit organization aimed at promoting innovative research that makes a difference in the lives of patients and their families. The actions of this association are carried out nationally and internationally. For more information, consult: http://www.apcdg.com/

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CDG Conference accounting with the presence of more than 400 registered participants

World Conference CDG

The Portuguese Association of Congenital Disorders of Glycosylation and Other Rare Metabolic Diseases (APCDG), together with the CDG & Allies Professionals and Patient Associations International Research Network (CDG & Allies - PPAIN)  are promoting the 5th World Conference on Congenital Disorders of Glycosylation (CDG), in a digital format from May 13th to 16th, next week. This event is considered the largest event on CDG worldwide, where currently more than 400 participants have registered, including families, professionals and representatives from the pharmaceutical industry.

"The event will be centred on the needs of people living with CDG and their families. Proof of this are the various panel discussions that will take place during the four days of the event. These panels include CDG families, researchers, doctors and the pharmaceutical industry. The organizing body aims to leverage dialogue between these relevant stakeholders. Collectively, they will identify solutions towards answering the needs of families and professionals themselves," says Paula Videira, co-founder and researcher of the CDG & Allies PPAIN network.

As it was stated previously, this initiative aims to identify the primary needs and challenges that CDG families and professionals face nowadays. Moreover, it also intends to address the latest innovations in the field in order to provide adaptive solutions to people living with CDG. The conference will involve the participation of around 120 international speakers from various parts of the world.

Among the various topics that will be addressed in the congress, the results of the international study "CDG Journey Mapping" are one the most highlighted that is being conducted by CDG & Allies - PPAIN. This study aims to classify, identify while searching for solutions for CDG people and families; as well as an overview of dietary and non-dietary supplementation approaches currently under development and clinical trials underway.

Vanessa Ferreira, founder of APCDG and co-founder and investigator of the CDG & Allies research network - PPAIN, adds: "We were scheduling the Conference to take place in a hybrid format. However, due to the pandemic, we decided to secure the digital format.  Thus ensuring the safety of all and guaranteeing that independently of current circumstances, our CDG community can easily get in touch".

"The Conference is much more than an event, it is the sharing of experiences. For many families, it is the light at the end of the tunnel due to the ongoing circumstances in which families and professionals feel alone and isolated. It is also the only event that offers a concrete response to the needs, because of its scope and multidisciplinary", concludes Carlota Pascoal, researcher at CDG & Allies - PPAIN and volunteer at APCDG.

For this congress, 50 posters applied, all of which were considered for Electronic Display. 25 were selected for short oral presentations, and others, due to their relevance, were selected for lectures. 

For more information about the posters: https://worldcdg.org/sites/default/files/2021-04/world_conference_on_cdg_2021_program_20210430.pdf

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