*World Congenital Disorders of Glycosylation (CDG) Awareness. Education. Diagnosis program 2018 - 2022*
“Awareness is like the sun. When it shines on things, they are transformed” – Thich Nhat Han
We are thrilled to announce the launch of the World CDG Awareness. Education. Diagnosis program for 2018 – 2022.
Based on our global and holistic vision about CDG, we are launching a series of awareness and educational materials, particularly dedicated to less frequent CDG types.
CDG are unknown and commonly misdiagnosed rare metabolic diseases. In order to learn about the families’ needs directly from the CDG community, back in 2015, the Portuguese Association for CDG (APCDG) coordinated the first “CDG Think Tank”. One of the outcomes was the urgent need to raise awareness for rarer CDG types.
“This new program is very ambitious, highly representative of CDG heterogeneity, and has a very clear message – Let’s not leave anyone behind!” affirmed Rita Francisco, CDG PhD student and advocate (volunteer at APCDG and CDG & Allies-PPAIN).
This series starts with an infographic dedicated to PIGN-CDG.
“We are creating several patient-friendly infographics aimed at explaining the symptoms of less frequent CDG types. Doctors and families will unite to run a global campaign to educate and inform around these CDG. We are also actively raising funds to support the creation of these resources” said Rosália Félix, Mother to a CDG adult patient and APCDG vice-president.
These resources are crucial for an early and accurate diagnosis which can improve the patient's quality of life as well as to improve treatments and care for their disease.
We deeply acknowledge the collaboration of all the volunteers working on developing these FREELY available resources. Especially to the families, who actively participated in the creation and improvement of this informative poster.
“This poster will be a great resource for families diagnosed with CDG-PIGN. It provides information that is easier to understand than the complex medical papers. This campaign also provides hope by sharing some of the successes of our amazing children.” explained Kerry Blondheim, CDG Mom.
With our news, comes a CALL for participation from you CDG Families and Professionals.
Download the PIGN-CDG infographic HERE.
“It’s important for the whole CDG community to have accessible resources! I think good communication leads to increased knowledge and knowledge is power!” - concluded Sandra Brasil, CDG postdoc researcher and advocate (volunteer at APCDG and CDG & Allies-PPAIN).
Let’s spread CDG Awareness like never before! And without leaving anyone (anywhere) behind!
How can you spread the word about CDG using these resources?
APCDG is nonprofit-organization aimed at fostering breakthrough research that make an important difference in the lives of patients and their family members. Our actions are performed at the national and international level. Learn more HERE.