Thank You To Everyone For Attending!
What a wonderful evening of raising awareness and connection!
You can view the photos from the night by clicking below
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
Farmer & The Sea Horse, 10996 Torreyana Rd, San Diego, 92121
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.
SAN DIEGO RARE DISEASE DAY SPONSORS
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.
Rachel Vanni
Michaelle Jinnette
Rachel Vanni is the Founder and President of The Charlie Elenore Foundation, a nonprofit dedicated to improving access to treatment for individuals and families affected by rare diseases. CEF is a 501(c)(3) nonprofit corporation based in San Diego, CA.
Michaelle Jinnette
Michaelle Jinnette
Michaelle Jinnette is the founder of the Cure KCNH1 Foundation. Their mission is to urgently improve the lives of individuals and families affected by KCNH1-Related Disorders by accelerating research toward the development of effective treatments and a cure, building connections within the KCNH1 patient and professional community.
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
$28 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.
Farmer & The Sea Horse,
10996 Torreyana Rd, San Diego, 92121