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2018 SBP Rare Disease Day Symposium & CDG Family Conference

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The Dana On Mission Bay, BW Premier Collection

1710 West Mission Bay Drive

San Diego, CA 92109

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Refund Policy

Refunds up to 30 days before event

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Event description


RDD and CDG Family Meeting 2018

About the Event

We proudly invite you to the 2018 SBP Rare Disease Day Symposium & CDG Family Conference, February 23-25, 2018 in San Diego, CA. The 2018 event is co-organized by Sanford Burnham Prebys (SBP) Medical Discovery Institute, CDG CARE and NGLY1.org.

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 23-24, and the family session on February 25.

Scientific topics will include:

  1. PMM2-CDG: Overview, Models and Therapies
  2. Other Glycosylation Disorders: Models and Therapies
  3. NGLY1: A Disorder of Glycosylation

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:

  • A poster session on Friday evening where junior investigators and postdocs present emerging science alongside patient and advocate presenters.
  • 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.
  • Family/Scientist Networking time on Saturday evening.

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.

Event Overview

Friday, February 23, 2018

  • 9:00am-5:00pm - SBP Scientific Session
  • 5:00pm-7:00pm - Poster Session

Saturday, February 24, 2018

  • 9:00am-12:00pm - SBP Scientific Session
  • 1:00pm-4:00pm - Doctor-Is-In Session
  • 4:00pm-7:00pm - Family/Scientist Networking

Sunday, February 25, 2018

  • 8:00am-5:00pm - CDG Family Conference

Registration Pricing

The 2018 SBP Rare Disease Day Symposium & CDG Family Conference is made possible by donations, corporate and industry sponsorships, volunteers, and nominal participant registration fees. These fees support material costs, meeting space, catering, and equipment required for the conference.

The registration fee for the 3-day symposium includes access to all Conference sessions, daycare service, lunch, and light refreshments during conference break times.

CDG parents and caregivers can choose to attend the full conference, or purchase single-day tickets. Prices are per person. CDG patients and siblings are free.

Registration Fees

General Admission




CDG Parents/Caregivers

$40/day or $100 for the full meeting

CDG Patients/Siblings



Online payment can be made via credit card (Visa, Mastercard, Discover, American Express) in the Eventbrite online registration system (click the green Tickets button above). Payment will be collected at checkout. No credit card is required for Patient/Sibling registration.

If you prefer to pay by check, please contact Amy Zimmon at azimmon@sbpdiscovery.org for an offline registration packet and instructions.


Are children able to attend the symposium?

All ages are encouraged to attend the event.

What childcare/daycare services are available?

The 2018 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 program is included in the registration fee, but space is limited, so advance registration is required.

Highlights of the Daycare Program will include: sensory and educational benefits provided through a music, art and storytelling 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 “carnival” booth entertaining exhibits offering face painting, photo booth opportunities and additional fun games, free exploration and movie presentations.

*Pre-registration for the Daycare Program must be completed by registering each child using the CDG Patient/Sibling ticket type (Enroll in onsite childcare program; Choose Yes ). Approximately 3 months prior to the Conference, a staff member will contact all families who have pre-registered to gather additional information and provide families with the hours, policies and procedures of the Daycare.

How do I participate in the Poster Session?

New in 2018, a poster session the evening of Friday, February 23, 2018 will provide a unique opportunity for junior investigators and postdocs to present emerging science on Congenital Disorders of Glycosylation and De-glycosylation alongside patient and advocate presenters.

Poster presenters must submit an abstract no later than Friday, January 19, 2018. Abstracts are limited to 250 words. Please click here to download a Poster Session registration form. In addition to Friday’s event, selected participants will be chosen by the selection committee to give a 10-minute oral presentation to symposium attendees on Saturday, February 24, 2018.

The Poster Session will begin at 5:00pm on February 23, 2018 at The Dana on Mission Bay. Admission to the Poster Session is included with your registration. Please note that registration to the full meeting on February 23 is required to attend this event. Light refreshments will be provided.

What is the Doctor-Is-In Session?

Now in its ninth year, the SBP Rare Disease Day Symposium’s Doctor-Is-In-Session brings together medical
researchers, clinicians, advocates, patients and their families for an afternoon of hands-on collaboration in a small-group, round-robin format. Families and professionals choosing to participate in this innovative information-sharing session will be contacted by event staff with more information. To pre-register, please be sure to select the "Doctor-Is-In Session" on your order form.

Are discounted rooms available at the hotel?

A room block for the 2018 event is available at The Dana on Mission Bay at the discounted rate of $135/night for a standard room or $175/night for a bay view upgrade. This rate is good for up to three days before and after the symposium, and includes free parking and free wi-fi.

To reserve your room, click here to book online. The group code for online booking is CDGCONFRNC. You can also call (800) 445-3339 and identify yourself as part of the CDG Annual Conference. The hotel's reservation deadline is January 23, 2018.

An advance deposit or credit card guarantee for the first night’s room and tax is required. Space is limited – early reservations are recommended. Hotel cancellation requests are subject to the cancellation policy of the hotel.

What meals are included with my registration fee?

Your registration fee includes lunch and light refreshments during session breaks, as well as admission to the Poster Session on Friday, February 23 and Family/Scientist Networking time on Saturday, February 24 (per-day tickets include events on the date of purchase). Evening events will offer refreshments, but not a full meal (Details TBD).

Breakfasts and dinners are not included. However, the hotel does have a dining establishment onsite and is offering a discounted all-inclusive buffet breakfast rate of $15.00 per adult/$7.50 per child for Conference attendees (Kids under 5 eat free). These vouchers may be purchased upon arrival at the hotel.

There is a General Store within walking distance where you can purchase food items and toiletries but please note that there are limited dining options within walking distance. More information can be requested from the hotel at check-in.

What are my transportation/parking options for getting to and from the event?

The Dana on Mission Bay is located 7 miles from the San Diego International Airport. Please note that public transportation in San Diego is limited and the hotel does not have a dedicated airport shuttle.

A one-way traditional taxi fare is approximately $40 with tip. Ride-sharing services such as Lyft ($13-$30 one-way)* or Uber ($13-52 one-way)* are widely used in the San Diego area. Renting a car is often the most economical option for a family visiting San Diego. The hotel does offer a free shuttle to nearby Sea World and Belmont Park, and parking at The Dana on Mission Bay is free.

*fare depends on class of service (basic to premium)

What's the refund policy?

The cancellation deadline is January 23, 2018. Please note that all registration cancellations will be charged a $30 cancellation fee. To request a cancellation, send a written notification by email to azimmon@sbpdiscovery.org, and a member of the event team will follow up with you directly.

No refunds will be issued for requests received after the cancellation deadline.

Who do I contact with questions?

SBP Rare Disease Day Symposium

SBP/General Inquiries: Amy Zimmon, azimmon@sbpdiscovery.org

CDG CARECDG CARE: Andrea Berarducci, conference@cdgcare.com

: Carrie Ostrea, carrie@ngly1.org

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Date and Time


The Dana On Mission Bay, BW Premier Collection

1710 West Mission Bay Drive

San Diego, CA 92109

View Map

Refund Policy

Refunds up to 30 days before event

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