Lisbon, Portugal 23 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/
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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/