ABOUT: Congenital Disorders of Glycosylation (CDG) are a group of inherited disorders that affect glycosylation. Glycoproteins have many very important functions in the human body and are required for the normal growth and function of all tissues and organs. CDG is a very rare disease (prevalence is estimated to be between 1/50,000 and 1/100,000).
APCDG is a small organization, with limited financial resources and, despite being based in Portugal we aim to have an international impact (since the CDG community is highly international and geographically dispersed). Consequentely, we would like to have someone who could, firstly, assess our communication strategy on the web and social media, and then to help us devise a strategy to reach and engage more people, being that one the reasons why we are interested in digital story-telling. Also, we would like to use the social media to develop a fundraising campaign and would like help and guidance for that project. We understand these sound like huge projects and challenges, thus we thank you in advance for being willing to share your time and expertise. We are truly passionate and committed to helping CDG patients and families and we want to be able to do it in the best and most effective way possible!
Founded in 2010, APCDG is a patient led and centric non-profit association, whose particular goal is to stimulate new research lines that make a difference in the lives of patients and families. APCDG initiatives are developed both nationally and internationally. APCDG is committed to finding a cure for Congenital Disorders of Glycosylation (CDG) and related disorders, improving the treatment options and giving information and support to people with CDG, through research, education, awareness programs and advocacy. APCDG top priority is to give a complete and holistic perspective of the patient as a person.