Social media is changing the landscape on how we communicate in an accurate manner about Rare Diseases and more common diseases!
For instance, lack of awareness and visibility is one of the biggest challenges for the rare disease community.
While public awareness and understanding of rare disease challenges has increased in recent years, much remains to be done. Limited awareness and visibility of CDG and related diseases contributes to underdiagnosis of these disorders, as well as difficulties in accessing specialized services and proper rehabilitation support. Early diagnosis of CDG and related pathologies is important for several reasons such as the timely management of clinical problems, genetic counseling, and when available, treatment. Thus, these diseases in contrary to the most common diseases are the prototype of condition that cries out for visibility and awareness-raising actions targeted for families, professionals and general public.
The goal of this exercise was to collect how helpful is social media in the field of Rare Diseases. In addition, examples of advances on the current knowledge of more common diseases have been included. Finally, different ways to accelerate communication of science is given.