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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!
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.
Call for research to improve the quality of life of people living with rare diseases
The CDG & Allies calls for research based on the needs of people living with rare diseases and their families, as a way to improve the quality of life of people living with Congenital Disorders of Glycosylation (CDG), a group of rare hereditary disorders. This alert comes as part of Rare Disease Day, which was celebrated on February 28.
Families embark in the mission to advance research to find treatments for rare diseases
CDG & Allies alerts to the importance of stimulating research to improve the quality of life of people living with Congenital Disorders of Glycosylation (CDG) and calls for a focus on people-centered research in collaboration with keystakeholders. This alert comes as part of World Day of the Sick on February 11th.
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