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*For immediate Press release*The Portuguese Association for CDG and related Rare Metabolic Diseases ...
*For immediate Press release*
The Portuguese Association for CDG and related Rare Metabolic Diseases launches resource to boost families’ decision-making capacity
Informed and active individuals have great potential in boosting basic and applied research
Lisbon, 24 of September 2012- Today, the Portuguese Association for CDG and related Rare Metabolic Diseases (APCDG-DMR) released a family resource book for Congenital Disorders of Glycosylation (CDG) a project done in collaboration with many International researchers, and healthcare professionals. This tool is designed to boost the ability to understand the diagnosis and to potentiate CDG families’ decision-making capacity. It is available on GUIA METABOLICA or CDG rare connect community at http://www.rareconnect.org/uploads/documents/the-practical-guide-for-cdg...
“The daily life experience and needs of families can increase the relevance of CDG research. Our organization provides researchers and healthcare professionals with the opportunity to hear what matters to families. This project is the result of a fruitful partnership amongst families, researchers and healthcare professionals. Together we make a real significant difference to the lives of those with daily live experience. Understanding the diagnosis is an important part that allows engagement of families in the decision-making process about their medical condition and the doctor’s recommendation." said the president for the Portuguese Association for CDG and related Rare Metabolic Diseases (APCDG-DMR), Vanessa Ferreira.
"As a parent of a child with CDG, I find the family resource book for CDG to be a critical document in enabling me to better understand and educate others about my daughter's rare condition. This international and collaborative project has helped me communicate with physcians and specialists in the treatment of my daughter's care. I am very grateful for the time and effort that was put into the completion of this project by international researchers, healthcare professionals and volunteers worldwide, said Andrea Berarducci (mother to a CDG child, USA)”.
“The relationship between researchers, health professionals and patients is changing! Nowadays, an empowered activated patient feels able to make informed choices about the management of a certain condition and is able to ask questions, to take responsibility for their health and to actively seek out, evaluate and make use of information. To boost families input and involvement in research, to increase partnership with professionals is one of our main priorities. Information on what is meaningful to families helps to develop research priorities and to boost the application of pioneer research initiatives,” said Vanessa Ferreira.
About the Portuguese Association for CDG and related Rare Metabolic Diseases:
The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) is a non-profit organization founded in 2010 by families affected by Congenital Disorders of Glycosylation (CDG) and related Rare Metabolic Diseases.
We believe in a patient-centred research to improve care and the quality of life and outcomes of those affected by Congenital Disorders of Glycosylation (CDG) and related Rare Metabolic Diseases. In essence, we envision a future in which patient-centred research is designed and healthcare is delivered in a way so that it can answer the needs of our families.
The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) aims to build a global voice to fight against the impact of Rare Metabolic Diseases in affected individuals and families.
The APCDG-DMR is involved in the identification, coordination and organization of various scientific and medical communication activities contributing to the improvement and enhancement of understanding and awareness of CDG Syndrome and related Rare Metabolic Diseases. The aim of these activities is to establish a relationship between scientists and society, to contribute to scientific debate and to increase media coverage of different aspects of rare metabolic diseases. Furthermore, collaborations with researchers, care professionals and therapists are developed in order to promote CDG and Rare Metabolic Diseases knowledge and awareness.
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