#WorldCDGConference: Want to know how to improve motor development and improvement of CDG patients? Wait until you listen to Dr. Chantal Verhille at the 3rd WORLD CONFERENCE CDG -15 and 16 July 2017.
Click HERE to see how registration works.
#RareDiseasesNews: A Rare Mother of 2 explains why it is crucial for her to advocate for her children.
Do you agree with her? #Advocacy #PhelanMcDermidSyndrome
Read the full testimony HERE
MAIS PARTICIPAÇÃO, melhor saúde uma excelente iniciativa promovida pelas organizações de pacientes e sociedade civil que promove e defende uma participação mais activa dos paciente e utentes do sistema nacional de saúde nas decisões em saúde.
A APCDG é signatária da Carta para a Participação Pública em Saúde. Saiba mais e assine também em http://bit.ly/2f7KQpk.
Agora a MAIS PARTICIPAÇÃO, melhor saúde aposta também na formaçao! 👏👏👏
O Dia Mundial da Consiciencialização CDG #WorldCDGDay está a chegar aos 4 cantos do nosso Portugal! 🇵🇹
Put your Heart into raising #CDGAwareness. Take a photo with a heart drawn on your hand or cheek and use our awareness frames to really make your Voice heard!
Let the world know you proudly support May 16th as #WorldCDGDay.
Go HERE to find our frames
#CDGResearch To prepare Liver CDG electronic Questionnaire we went on several phases. The principal base was our the systematic literature review “Liver involvement in Congenital Disorders of Glycosylation (CDG)” recently published. This work can be found HERE.
#RareDiseasesNews:Let’s Make Diagnoses for Rare Disease Common - An Interesting webinar for the Rare Disease Community on May 4th at 10am CST (4pm BST / 11am EDT). Register HERE
Lack of public awareness and visibility of CDG contributes to under-diagnosis and difficulties in accessing specialized services and proper rehabilitation and support! That is why the #WorldCDGDay is so Important!
Promote #CDGAwareness in any way you can!
Go HERE. to find our suggestions
#WorldCDGConference: Do you want to learn more about the Natural History of CDG and future perspectives?
Prof. Hudson Freeze will talk about this at the 3rd WORLD CONFERENCE CDG Leuven, Belgium (15 and 16 July 2017). See HERE to start your registration!
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