Ultragenyx Rare Family Day 2025 takes place on Saturday, October 11, 2025 starting at 11:00 AM at Ultragenyx in Novato, California.

Rare Family Day is open to all who wish to attend.

Make sure you register under the Attendance Type: “Rare Family Patient with Travel Stipend.”

• The registration platform is set up to recognize email addresses for those that have an approved travel stipend.
• When you enter the email address where you received your invitation, the Attendance Type “Rare Family Patient with Travel Stipend” should automatically show up in the dropdown menu. If it doesn’t, check the email address where you received your invitation and make sure you are entering your email address correctly.
• If that doesn’t work, please contact RareFamilyDay@blineevents.com and we will help make sure you get registered correctly.

The travel stipend recipients have been determined by the EveryLife Foundation for Rare Diseases based on previous waitlists.

• It’s now based on an application that opens in the Spring.

We would still love to have you if you can attend! This event is free and open to the public if you'd like to join.  Please kindly note that your family would be responsible for paying for travel and accommodations if you would like to attend this year.

To secure a spot at Rare Family Day 2025, please pre-register online. Day of registrations will be accepted however to speed up check in at the event, it is preferred to pre-register online.

After 12:00 pm on October 9, pre-registration will no longer be available. You can register the day of, once you arrive.

Yes, it's important to register everyone that will be attending in your group, even our youngest guests under 2 years old. 

During the registration process, each person will complete a separate registration.

For patient registrations, the patient must be the first registrant, then other members of the group can be added.

Patients and their families who have approved travel stipends: August 28

Patients without travel stipends, attendees and employees: September 26 

• There is an option to modify your registration through your registration details page, which you'll be able to access through your confirmation email. 
• For patients with travel stipends, please email RareFamilyDay@blineevents.com for any updates to your registration including if you’re no longer able to make it to the event.

Flight bookings will be managed by AmTrav - you will be provided a link to book your flights upon registration completion.

• Airfare Limit: Up to $600 round trip per person. If your flight exceeds this amount, AmTrav will notify EveryLife and we’ll work with you to find a reasonable solution.
• Cabin Class: Economy only. If you’d like to upgrade, please first book the flight through AmTrav, then contact AmTrav customer support to request the upgrade.
• Airlines: You may book with any airline available through AmTrav.
• Travel Dates: You may select your preferred dates, but we recommend:
  • Arrival by 5:00 PM on Friday, October 10
  • Departure anytime on Sunday, October 12

If you choose alternate dates, you will be responsible for your own accommodations outside the official event window.

Booking Deadline: All flights must be submitted by September 10, 2025. We strongly encourage families to book within a few days of registering to ensure the best availability and flight options.

Ultragenyx employees are not eligible for company paid travel during the 2025 event.

Nearby hotels:

Best Western Plus Novato Oaks Inn
215 Alameda del Prado, Novato, CA 94949 
(415) 883-4400

Courtyard by Marriott Novato Marin/Sonoma
1400 Hamilton Pkwy, Novato, CA 94949
(415) 883-8950

Yes, plenty of parking is available at the event and there will be parking attendants to help guide you.

There is no cost to park.

Transportation is provided to and from the event for families with travel stipends.

• Hyatt Regency SFO has a shuttle that runs from the airport to the hotel. The 24-hour complimentary San Francisco International Airport (SFO) shuttle runs every 15 minutes from 4:00 AM until 1:00 AM and every 30 minutes from 1:00 AM until 4:00 AM. At SFO, go to the area marked "Hotel Shuttle." The bus is marked "Hyatt Regency and Marriott.”
• Shuttle transportation will be provided to and from Rare Family Day (Ultragenyx) and Hyatt Regency SFO. 

October is the second warmest month in San Francisco!

The weather in Novato, where Ultragenyx is, can be a lot warmer than it is at the hotel because of the bay. Be sure to check the weather and pack accordingly to both locations.

We strongly suggest wearing sunscreen, dressing in layers to keep you warm in the morning and cool in the afternoon, and wearing comfortable walking shoes.

On Rare Family Day, food & beverage will be provided at the event including beer and wine for those 21+. 

For patients with travel stipends: VISA gift cards will be provided to cover costs of food and beverage for the remainder of your travel time in California. There is a restaurant and grab-n-go area in the hotel open from 6:00 AM - 11:00 PM. While there are limited restaurants within walking distance to the hotel, many restaurants deliver to the hotel via GrubHub, DoorDash, or UberEats. If your family would like to explore, there are lots of food options in San Francisco, about a 30-minute Uber ride away. We suggest visiting Pier 39 to see iconic views, sea lions, shop, and enjoy delicious food options. 

During registration, you can note specific dietary restrictions for the day of the event. From there we work with nutritionists and catering to accommodate. At the event, all food will be labeled. If you’re looking for something specific and need assistance, please find one of the event staff and they will be happy to help you. It’s important that every guest eats and has a comfortable experience.

Yes! The lost and found will be located at the registration and information desk. If any items do not get picked up, they will be moved to the reception desk at Ultragenyx.

If you are missing an item after the event please contact: UltragenyxEvents@ultragenyx.com.