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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Portuguese Association for CDG


Phone

0033641842555

Email Address

sindromecdg@gmail.com

Description

We are a 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. The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) vision is developed from the belief of its founder that to achieve the hopes of patients and families who suffer from rare diseases, key stakeholders need:


  • To include patients and their representatives as full partners during the overall research and clinical program;

  • To be patient-centric in their thinking.


This is a very promising and innovative approach whereby all parties combine their strength and expertise in a collaborative, dynamic and shared spirit.  That is the key driver to achieving transformative, potentially life-saving therapies that can revolutionize the clinical treatment of a disease and offer new life to patients and concerned families.

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