Hospital Sant Joan de Déu
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National CDG Family Conference - United States

CDG Care- Rare Commons
Viernes, 5 Febrero, 2016

The 2016 National CDG Family Conference is organized by CDG CARE in partnership with NGLY1.org and the Sanford Burnham Prebys (SBP) Medical Discovery Institute. This innovative and educational event will be hosted at the Clarion Inn Del Mar, in Del Mar, CA.  The agenda represents a diverse panel of clinical, investigational, translational (therapeutic) and community experts from across the United States. 

The 2016 National CDG Family Conference has strategically been organized to build upon the events leading up to RARE Disease Day 2016. Through the SBP Seventh Annual Rare Disease Day Symposium: Human Glycosylation Disorders and CDG Family Conference, an inclusive and collaborative community infrastructure will be developed for medical professionals and families to support and enhance CDG research, knowledge, therapeutic and alternative treatment strategies. The event is going to be held between the 27 th and the 29 th of February.

The objective of the 2016 CDG Family Conference is to facilitate the meeting and collaboration of medical professionals and families in order to share knowledge and experience, and discuss common issues of patients living with CDG in a supportive and friendly environment. The conference program is designed to promote the exchange of education, resources and therapeutic approaches to maximize the overall quality of life and health outcomes for children, youth and adults affected by CDG. The Conference will increase the knowledge of families by presenting alternative and cutting edge treatments and therapies for children and adolescents living with mild to severe physical and developmental disabilities. 

The presentations include the development and plan for participation in the collaborative, global patient database and research initiative, Rare Commons. Rare Commons is a global research project focused on the biomedical study of rare diseases that affect children. This patient-centered initiative will enable clinical analysis and health outcome data to be compiled, shared, and used to facilitate sustainable funding for future CDG awareness and research efforts. Rare Commons is a project leaded by the Sant Joan de Déu Children's Hospital in Barcelona.

The Conference is organized and run by volunteers, and is made possible by grants, donations, sponsorships and a nominal participant registration fee. This year’s Conference Committee is proud to have received a generous charitable grant from WaterStone and to be an honored recipient of the 2016 Global Genes RARE Patient Impact Grant Program. 

The Conference Committee also acknowledges and thanks all of the conference donors, volunteers and contributors for making the organization of this significant event possible and looks forward to continued collaboration in the future.

CDG CARE is a nonprofit organization founded by parents seeking information and support for a group of disorders known as Congenital Disorders of Glycosylation. Our mission is to promote greater awareness and understanding of CDG, to provide information and support to families affected by CDG, and to advocate for scientific research to advance the diagnosis and treatment of CDG.  For additional information, resources, event or research updates, please contact CDG CARE at info@cdgcare.com

Access to the agenda of the CDG Family Conference.  

 

 

Última modificación: 
05/02/2016