Rare Disease Day Symposium & CDG/NGLY1 Family Conference

2022 Rare Disease Day Symposium graphic

Date and time

February 25, 2022 - 8:00 am PST
February 27, 2022 - 5:00 pm PST


The Dana Hotel on Mission Bay

1710 W. Mission Bay Drive
San Diego, CA 92109


2022 Rare Disease Day SymposiumHosts

  • Hudson Freeze, Ph.D.
  • This year's event is organized by Sanford Burnham Prebys in partnership with CDG CARE.

Daily events

  • Friday
    Scientific Meeting and Poster Session
    8:00am–7:00pm PST

  • Saturday
    Scientific Meeting and Doctor-is-in-Session
    8:00am–4:30pm PST

  • Sunday
    CDG CARE Family Meeting
    8:00am–5:00pm PST

2022 CDG & NGLY1 Conference Best Moments

About the event

We proudly invite you to the 2022 Sanford Burnham Prebys Rare Disease Day Symposium & CDG/NGLY1 Family Conference, February 25-27, 2022 in San Diego, CA. The 2022 event is co-organized by Sanford Burnham Prebys and CDG CARE.

The objective of this Conference is to combine patient-centered science and real-world strategies for patients and families living with a Congenital Disorder of Glycosylation in a supportive and friendly environment. We will facilitate the meeting and collaboration of approximately 150 medical professionals and families in order to share knowledge and experience, and discuss common issues of patients living with CDG.

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 25-26, and the family session on February 27, 2022. To learn more about the symposium and family conference, including confirmed speakers and topics, click the red button.

Symposium/Speaker Agenda
Please check back for updates

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.

In partnership with CDG CARE, the 2022 Sanford Burnham Prebys Rare Disease Day Symposium & CDG/NGLY1 Family Conference will focus on Congenital Disorders of Glycosylation "CDG Models and Therapy".

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. Basic Science of Multiple CDGs
  2. Glycosylation Disorder Models
  3. Overview: Models and Therapies

Family topics will include:

  1. CDG & NGLY1 Clinical Care Management
  2. Research: Current Studies, Patient Opportunities and Future Outlook
  3. Innovative and Recommended Therapies and Beyond

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. Our biennial innovative doctor-is-in session, where physicians and scientists meet with small groups of family members in a round-robin format, on Saturday afternoon
  3. Family/Scientist Networking time on Saturday evening


Conference Safety Protocol

As co-organizers of the 2022 CDG/NGLY1 Scientific and Family Conference, Sanford Burnham Prebys and CDG CARE look forward to welcoming attendees to San Diego February 25-27, 2022.

In light of the ongoing COVID-19 pandemic, the health and safety of attendees, presenters, exhibitors, staff, and the local community is a priority for this event. Throughout the conference, seating arrangements that maximize social distancing will be used as feasibly possible during meeting sessions and the use of outdoor venues for luncheons and receptions will be arranged. To ensure the safest possible in-person gathering, vaccinations and mask wearing will be required to attend the conference sessions and throughout the event as detailed in the Conference Safety Protocols available below.

Conference Safety Protocol


Poster session

The Poster Session will begin on at 5:00pm on Friday February 25, 2022 at The Dana on Mission Bay. This session will provide an opportunity for scientists to present emerging research in Glycobiology.  Admission is included with your symposium registration. Light refreshments will be provided.


Posters should show new or just-published material that has not been presented elsewhere at a prior conference or scientific event. Posters should be printed with horizontal orientation at 48” width and 36” height. There is no particular design or layout that we are requiring. We will provide an easel, binder clips, and a hard board to which you can clip your poster. If your abstract is accepted, please plan to arrive at the venue no later than 4:30pm on Friday, February 25 to set up.

Abstract Submission

The abstract submission deadline is Friday, February 4, 2022. Abstracts are limited to 250 words. Acceptance will be acknowledged by February 11, 2022. Questions? Please email 2022 Abstract Submission.


Sponsorship opportunities

The CDG Scientific & Family Conference is organized and run by volunteers, and is made possible by donations, sponsorships and a nominal participant registration fee. Your tax-deductible individual donation, or organizational sponsorship will help ensure that this Conference is a success, and 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.

To learn more about our 2022 Conference Sponsorship Opportunities, click on the link below.




Due to the COVID-19 pandemic and fluctuating CDC and State safety, mask, and social distancing regulations, we will be unable to offer our traditional "Therapeutic Daycare Program" for families attending the event. CDG CARE will provide designated on-site spaces for families to care for and entertain their CDG child(ren) and siblings during conference sessions. CDG CARE is also working with local child care agencies to offer referrals and potential financial assistance for child care for families traveling to San Diego. If you are in need of a referral for child care services, or to receive updates from CDG CARE on eligibility for potential financial assistance, please email Andrea Miller at


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. Standard rooms are available at $139 and can be booked directly using the registration link reserve online or calling the hotel. Discounted lanai room upgrades and suites are also available starting at $179 based on availability, to book please call the hotel directly.

To reserve your room, please call Reservations Department directly at (800) 445-3339 or (619) 222-6440 and mention “Annual CDG Conference 2022”  to book any room type at the discounted group rates (based upon availability) as well as extend your stay. All rates are good for up to three days before and after the symposium and include free parking and Wi-Fi.

The hotel’s reservation deadline is January 23, 2022 and rooms fill up quickly.


We look forward to your participation!

Previous Rare Disease Day Symposia

2020 2019 2018 2017


All previous Rare Disease Day Symposia