Join Us for International Rare Disease Day in San Diego February 28, 2026
Raising awareness and uniting advocates
Location to be announced soon!
4:00PM-7:00PM
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 buildings in San Diego.
This year on February 28, there will be a reception with heavy appetizers and beverages at [a location to be announced shortly] 4:00 PM to 7:00 PM.
A group photo will be taken at the event
At the conclusion of the event, attendees are encouraged to continue networking and socializing.
Please let us know if your organization or property is lighting up for Rare Disease Day so we can recognize you also.
organizers of San Diego Rare Disease Day
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.
We’re also proud to partner with @Genetic Alliance as our nonprofit partner. Genetic Alliance has been a longstanding leader in advocacy, research, and support for individuals and families affected by rare diseases, and we’re honored to work alongside them for this community-focused event.
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.
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.
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 the other years.
Join Us
Tickets & Fine Print
$25 for the 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 is free.