Rare Disease Day Celebration

For immediate press release

Portuguese Association for CDG calls for improved awareness for CDG on International Rare Disease Day 2015

26 February 2015, Lisbon (Portugal) - The Portuguese Association for CDG and related rare Metabolic Diseases (APCDG) today announced new global awareness materials for CDG and supports the celebrations dedicated to the World Rare Disease Day 2015 meant to support and strength patient advocacy groups.

Lack of awareness and visibility is one of the biggest challenges for CDG and other rare disease community. While public awareness and understanding of rare disease challenges has increased in recent years, much remains to be done for CDG.

“Limited awareness and visibility of CDG contributes to underdiagnosis of these disorders, as well as difficulties in accessing specialised services and proper rehabilitation support,” said Rosália Félix (vice-president, APCDG). Early diagnosis of rare diseases is important for several reasons such as the timely management of clinical problems, genetic counseling, and when available treatment. “CDG is the prototype of condition that cries out for visibility and awareness-raising actions targeted for families, professionals and general public. Under the scope of the APCDG Global Awareness Program several tools have been created: a new website, an info graphic illustrating key information about CDG and a key fact campaign disseminated through social network. Overall, these tools will make a difference by increasing information and consequently, improving care to people living with CDG”, added Rosália Félix.

February 28 is World Rare Disease Day!