Several recent publications from CDG and Allies show that finding accurate and reliable information about CDG among the millions of online sources is a difficult task for almost everyone. “In a heavy technology society, the internet provides access to information in a way unimaginable 50 years ago. Creating and ensuring access to information is a priority for CDG and Allies. Therefore, https://worldcdg.org/ centralizes access to information and improves communication around CDG, helping families to have a proactive attitude towards healthcare decision-making and research participation“ said Vanessa Ferreira (sibling to a person living with CDG and researcher and co-founder at CDG and Allies and Portuguese Association for CDG).

The use of plain language in health literacy initiatives has provided positive effects in health communication, comprehension, and usability among nonclinical stakeholders. Plain language is the use of basic, assertive, and clear phrases that non-medical experts can understand.

Recent research by CDG and Allies revealed that CDG families face disparities in diagnosis, care, access to information, and therapies due to funding, ethical, and legislative difficulties. Overall findings suggest establishing and strengthening a community-centric strategy for CDG drug development that supports active engagement from all stakeholders.

As perceções coletivas, experiências e expectativas da comunidade CDG, incluindo famílias, investigadores, e profissionais de saúde, são desconhecidas. A CDG foi descrita em 1980 e, neste estudo, unimos a nossa comunidade, e perguntámos por que razão, 40 anos após a descrição da CDG, ainda não temos mais ensaios e terapias para a CDG

The collective perceptions, experiences, and expectations of the CDG community, including families, researchers, and healthcare professionals, are unknown. CDG was described back in 1980 and in this study, we have united our community, and asked why 40 years after CDG description, we do not have yet more trials and therapies for CDG?

“The use of surveys to listen to what matters to a certain community are a valuable source of data and their use is increasing among rare diseases. Since families and professionals are geographically dispersed, these approaches bring the community together and allows us to gather the evidence we need to fight for a better quality of life for CDG”, referred Vanessa Ferreira (CDG and Allies researcher, president to APCDG and sister to a person living with CDG).

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.

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.

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.