Symposia

2020 SBP Rare Disease Day Symposium & CDG Family Conference

Rare Disease Day Symposium
Faculty Host(s)
Hudson Freeze, Ph.D.
Contact
Debi Jeffery
Starts:
Ends:
Time Zone:
PT
Event Location(s):
The Dana Hotel on Mission Bay

1710 W. Mission Bay Drive
San Diego, CA 92109

(800)445-3339
www.thedana.com

Map Link

Register

 

 

About the event

We proudly invite you to the 2020 SBP Rare Disease Day Symposium & CDG Family Conference, February 28- March 1, 2020 in San Diego, CA. The 2020 event is co-organized by Sanford Burnham Prebys Medical Discovery Institute and CDG CARE.

This joint scientific and family symposium will be held at The Dana on Mission Bay in San Diego, CA, with the scientific session on February 28-29, and the family session on March 1. To learn more about the symposium and family conference, including confirmed speakers and topics, click here to view the preliminary agenda.

Please note that speakers and topics are subject to change. To facilitate communication between the scientific and family communities, all participants are encouraged to attend the full symposium.

Day Care
The 2020 SBP Rare Disease Day Symposium & CDG Family Conference will offer a Therapeutic Daycare Program for both children and young adults affected by CDG and their siblings. The Daycare will be open Friday, February 28th – Sunday, March 1st, during Conference sessions. The Daycare will be closed Saturday afternoon during the Doctor-is-in Session. 

Highlights of the Program will include: sensory and educational benefits provided through an interactive group music program; physical interaction and exploration of animals through a wildlife experience; a full-day of occupational therapy and fun through the “Movement, Muscles and Messes” program provided by a local University Pediatric OT Program; and a variety of additional games, activities, free exploration and movie presentations

*Pre-registration for the Daycare must be completed by registering each child using the CDG Patient/Sibling ticket type (Enroll in onsite childcare program; Choose Yes ). Daycare tickets are available on a first come first serve basis, and once the Daycare is full, a waitlist will be created.

Approximately 3 months prior to the Conference, a staff member will contact all families who have pre-registered to confirm attendance, gather additional information, and provide families with the hours, policies and procedures of the Daycare. If you have any additional questions regarding the Daycare, please email Andrea Miller at conference@cdgcare.com. 

Event Information
The eleventh annual SBP Rare Disease Day Symposium will focus on Congenital Disorders of Glycosylation.
Researchers, clinicians, patients, family members, industry experts, and inspirational advocates will bring their talents and special stories to Mission Bay in San Diego, CA. Together, we will foster new perspectives, ideas, and collaborations to accelerate therapeutic efforts for those living with CDG.
Scientific topics are broad and diverse including:
1.  PMM2-CDG: Overview, Models and Therapies
2.  Other Glycosylation Disorders: Models and Therapies
3.  Basic Science of Multiple CDGs
 
Family topics will include:
1.  Education on the science behind this class of disorders
2.  Resources available for patients and families
3.  Interventional and therapeutic approaches
 
Scientific and family meetings will be bridged by three interactive events:
1. A poster session on Friday evening where scientists and clinicians present emerging research in Glycobiology and CDG.
2. SBP’s innovative doctor-is-In session, where physicians and scientists meet with small groups of like-minded
family members in a round-robin format, on Saturday afternoon.
3. Family/Scientist Networking time on Saturday evening.

Event Hotel and Accommodations

The Dana Hotel on Mission Bay is located in one of San Diego’s favorite family vacation areas, minutes away from local attractions. A room block is available at the discounted rate of $135/night for a standard room or $155/night for a lanai room. This rate is good for up to three days before and after the symposium, and includes free parking and Wi-Fi. To reserve your room, please call (800) 445-3339 and identify yourself as part of the CDG Annual Conference, or reserve online here.

The hotel’s reservation deadline is January 28, 2020 and rooms fill up quickly.

We look forward to your participation!