Join Us for International Rare Disease Day in San Diego February 28, 2025
Raising awareness and uniting advocates
Reception at Brigantine Portside Pier Downtown San Diego,
3:30-6:00PM. Group picture
About San Diego Rare Disease Day - February 28
Buildings Illuminated Across San Diego
To recognize International Rare Disease Day on February 28, many buildings across San Diego will be illuminated with the day's colors - blue, green, pink, and purple. Since 2021, the rare disease non-profit ADCY5.org has helped coordinate the lighting of the historic SD County Administration Center on International Rare Disease Day.
This year on February 28, there will be a reception with heavy appetizers and beverages at The Brigantine Portside Pier Downtown San Diego from 3:30 PM to 6:00 PM.
A group photo will be taken across the street in front of the SD County Administration Center between 6:00-6:15 PM.
At the conclusion of the event, attendees are encouraged to continue networking and socializing in vibrant Downtown San Diego.
Please let us know if you organization or property is lighting up for Rare Disease Day so we can recognize you also.
San Diego Rare Disease Day Sponsors
Thank You
A special thank you to Lundbeck, who stepped up to be the Gold Sponsor for this rare disease event.
These sponsors, in collaboration with the organizers, have helped set the stage to
bring all stakeholders in the San Diego rare disease journey together and
build the relationships needed to further our mission.
(Sponsorships are still available.)
organizers of San Diego Rare Disease Day
Effie Parks
Effie Parks hosts the rare disease podcast Once upon a Gene that serves as a home-base for rare disease advocacy , community and connection. She is mom to 2 rad kids, one of whom has CTNNB1 syndrome. Make sure to subscribe to the podcast and follow on social media.
Jane Maine
Jane Maine is based in San Diego and her team delivers best-in-class events for clients globally. She has helped firms in biotech, finance and telecom that include AB SCIEX, ConvergeOne, Illumina, Life Technologies, PwC and PacBio.
We are sure glad to have her 17 years of experience for this Rare Disease Day event.
Gay & Steve Grossman
Gay & Steve Grossman
The full-body presentation of the ADCY5 Rare Movement Disorder, often misdiagnosed as cerebral palsy, was discovered here in San Diego by researchers at Scripps Research, UCSD, and Rady Children's. Many other San Diego researchers have advanced the science so that hundreds of affected patients have been found across the globe, and offere
The full-body presentation of the ADCY5 Rare Movement Disorder, often misdiagnosed as cerebral palsy, was discovered here in San Diego by researchers at Scripps Research, UCSD, and Rady Children's. Many other San Diego researchers have advanced the science so that hundreds of affected patients have been found across the globe, and offered support or
treatment options.
ADCY5.org is an all-volunteer 501(c)(3) nonprofit corporation.
Want to know more about international Rare Disease day?
International Rare Disease Day is an annual day of awareness for rare diseases that takes place on or near the last day of February. The day's goal is to raise awareness and advocate for better care for people with rare diseases.
How it's celebrated
- Wearing stripes The US National Organization for Rare Disorders (NORD) encourages people to wear striped clothing, usually zebra stripes, to show support. The zebra is the mascot of the rare disease community because every zebra is rare and no two zebras have the same set of stripes.
- Sharing stories People with rare diseases are encouraged to share their stories, experiences, and hopes for the future.
- Lighting up public buildings Monuments and public buildings around the world are lit up in the colors of Rare Disease Day: blue, green, pink, and purple.
- Hosting events Organizations host events that include presentations, posters, exhibits, and art shows.
Who's involved
- EURORDIS: The rare disease group that leads the international awareness raising campaign
- National Institutes of Health (NIH): An agency that hosts events to raise awareness and showcase research collaborations
- U.S. Food and Drug Administration (FDA): An agency that sponsors events to raise awareness
- National and local rare disease advocacy stakeholders like ADCY5.org, Contenta Meetings, and Once Upon a Gene
Why it's celebrated on February 29?
- February 29 is the rarest day of the year. Since that date only comes along once every four years, February 28 is the date for off-years.
Join Us
Tickets & Fine Print
$25 for the Brigantine reception helps defray costs. Due to fire code, the number of reception attendees is limited. Obviously, the cost for the group picture, socializing, and networking at SD County building is free.
Map, Parking, & schedule - San Diego Rare Disease Day
Map and Parking
Schedule
- 3:30-6:00PM - Reception: Brigantine Portside Pier Downtown SD, 1360 N Harbor Dr, San Diego, 92101
- 6:00-6:15PM - Group Picture: San Diego County Administration Center, 1600 Pacific Hwy, San Diego, CA 92101
- After Group Picture: Enjoy downtown San Diego
- PARKING: There is a well lit, accessible garage next to the County building on Ash St. There are also other options.