Svenska CDG-föreningen is a patient support association based in Stockholm that focuses on raising awareness about Congenital Disorders of Glycosylation (CDG). The organization is dedicated to providing support and resources for individuals and families affected by CDG, helping them navigate the challenges associated with the condition. It offers educational materials and information to enhance understanding of CDG, which is crucial for both patients and healthcare professionals.
The association organizes various events and activities, including the observance of World CDG Day on May 16, to foster community engagement and awareness. It also facilitates networking opportunities for families affected by CDG and healthcare professionals, promoting collaboration and shared experiences. Additionally, Svenska CDG-föreningen is involved in advocacy efforts aimed at improving services and support for those impacted by CDG, while encouraging community involvement and volunteer opportunities to further its mission. The organization regularly shares updates and news related to CDG and its initiatives, keeping the community informed and connected.