News Rare Disease Day Symposium Reg & Abstract Deadline Extended to Feb 15

Rare Disease Day Symposium Reg & Abstract Deadline Extended to Feb 15

February 8, 2018
9th Annual SBP Rare Disease Day Symposium & CDG Family Conference
“Congenital Disorders of Glycosylation and De-Glycosylation”
February 23-25, 2018, San Diego, CA

 
REGISTRATION AND ABSTRACT DEADLINE EXTENDED TO FEBRUARY 15, 2018
 
Register at http://www.sbpdiscovery.org/rarediseaseday
Poster abstract form available on the website (Contact: Amy Zimmon, azimmon@sbpdiscovery.org)
 
 
There are 30 million people in the US affected by rare diseases, and half of them are children. The need for sharing information and finding treatments is more urgent than ever.
 
In February 2018, Sanford Burnham Prebys Medical Discovery Institute, in partnership with CDG CARE and NGLY1.org, will host the ninth annual SBP Rare Disease Day Symposium, “Congenital Disorders of Glycosylation (CDG) and De-glycosylation.” This unique three-day event brings together different affected groups—patients, families, advocates, researchers, clinicians and industry leaders—to share critical information about the science behind these rare diseases.
 
SBP’s scientific symposium will be held Friday, February 23 and Saturday, February 24, 2018. We will kick off with keynote presentation “21st Century Medicine Will Transform Healthcare” from scientific luminary Leroy Hood, MD, PhD, the President and Co-Founder of the Institute for Systems Biology. In total, 22 noted CDG and NGLY1-focused scientists and clinicians will speak on the following topics: NGLY1: A Disorder of Glycosylation, PMM2-CDG: Overview, Models and Therapies, and Other Glycosylation Disorders: Models and Therapies. We are also excited to offer the symposium’s first Poster Session the evening of Friday, February 23—a new opportunity for junior investigators and postdocs to present emerging science in glycobiology.
 
The three-day event will conclude on Sunday, February 25 with the CDG CARE/NGLY1.org CDG Family Conference. Family topics include education on the science behind CDG, resources available for patients and families, and interventional and therapeutic approaches. The family meeting is more practical in approach about daily living, but maintains a significant scientific element.
 
Event Chair: Hudson Freeze, Ph.D., professor of Glycobiology and director of SBP’s Human Genetics Program at Sanford Children’s Health Research Center in La Jolla, Ca., will chair the symposium. He discusses the impact of this collaboration in this video. Retrophin, this year’s Presenting Sponsor, “is proud to support SBP’s ongoing research in the treatment of rare diseases through this engaging forum that fosters the exchange of knowledge, ideas and insights regarding the scientific advancements and impact of living with rare diseases,” said Stephen Aselage, chief executive officer of Retrophin. For more detailed information on presenters and topics, click here.
 
 
 
About SBP
Sanford Burnham Prebys Medical Discovery Institute (SBP) is an independent nonprofit medical research organization that conducts world-class, collaborative, biological research and translates its discoveries for the benefit of patients. SBP focuses its research on cancer, immunity, neurodegeneration, metabolic disorders and rare children’s diseases. The Institute invests in talent, technology and partnerships to accelerate the translation of laboratory discoveries that will have the greatest impact on patients. Recognized for its world-class NCI-designated Cancer Center and the Conrad Prebys Center for Chemical Genomics, SBP employs about 1,000 scientists and staff in San Diego (La Jolla), Calif., and Orlando (Lake Nona), Fla. For more information, visit us at SBPdiscovery.org or on Facebook at facebook.com/SBPdiscovery and on Twitter @SBPdiscovery.
 
About CDG CARE
CDG CARE is a nonprofit organization founded by parents seeking information and support for a group of disorders known as Congenital Disorders of Glycosylation (CDG). 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. The strategy of CDG CARE is to disseminate information through a modern website, publish and distribute a semi-annual e-newsletter, organize a bi-annual North American CDG family conference, and collaborate globally with medical professionals and nonprofit associations worldwide. To learn more about CDG CARE and our programs, like us on the CDG CARE Facebook page and visit our website at cdgcare.com.
 
About NGLY1.org
NGLY1.org is a nonprofit 501(c)(3) patient support, advocacy and research organization for N-Glycanase (NGLY1) Deficiency. NGLY1.org’s mission is to eliminate the challenges of NGLY1 through research, awareness and support. NGLY1.org improves the lives of patients through family support, diagnostic access, clinical and patient education, conferences, and grants. For more information, visit NGLY1.org