Now Open: Rare Family Day Travel Stipend Application

Applications open through June 26

The EveryLife Foundation for Rare Diseases is excited to invite families to apply for travel stipends to attend Rare Family Day 2026 on October 3. Hosted by Ultragenyx at its campus in the San Francisco Bay area, this special event brings rare families together from across the country for a day of connection, celebration, and fun. Ultragenyx was founded by Dr. Emil Kakkis, a pioneer in rare disease therapy and the founder of the EveryLife Foundation.

Rare Family Day features activities, food, advocate speakers, a Rare Artist display, and more, creating a fun and welcoming environment for families to connect and celebrate together. Thanks to the generous support of Ultragenyx, a select number of families will receive travel stipends covering flights, hotel accommodations, transportation, and meals.

The travel stipend application is open through June 26, with families notified by the end of July. Families interested in attending independently may contact Stephanie Riordan, Senior Director of Patient Programs, to receive registration information when it opens in August.

Travel Stipend Information

Priority for travel stipends will be given to advocates involved in EveryLife Foundation programs, first-time Rare Family Day attendees, and families with children under 18.

If awarded, each travel stipend includes:

• Economy flights for up to 5 immediate family members and/or caregivers, booked through a dedicated platform with agent support
• Transportation to/from the hotel and event venue on October 3
• Hotel accommodations from October 2-4 (2 nights)
• VISA gift card for meals support

Experience the Impact: Rare Family Day 2025

Check out a recap of last year's Rare Family Day!

Connect with Rare Families like Yours

Whenever possible, the EveryLife Foundation strives to award travel stipends to multiple families affected by the same rare disease to foster connection and support. To help more families learn about this opportunity, you are encouraged to share this within your community, such as Facebook support groups or advocacy groups. Families with ultra-rare or undiagnosed conditions are also encouraged to apply, as this event is about bringing together a community of shared experiences.

A 2025 attendee and Mom, Katie, shared: "For families like mine, living with a rare disease can often feel like walking a path few understand. But this day reminded us that we are not alone. Surrounded by others who share similar stories, hopes, and challenges, we felt truly seen and heard! It was really meaningful for our family to travel together and experience this as one. Watching Cade connect, smile, and just enjoy the day with others who understand the rare disease world was a gift in itself. The same can be said for his brothers!" 

Travel Stipends for Rare Family Day are made possible thanks to the generous support of: