To: Board of Supervisors
From: John Gioia, District I Supervisor
Report Title: Declare February 29, 2024 Rare Disease Day in Contra Costa County
☒Recommendation of the County Administrator ☐ Recommendation of Board Committee
RECOMMENDATIONS:
Declare February 29, 2024 Rare Disease Day in Contra Costa County
FISCAL IMPACT:
NA
BACKGROUND:
See Resolution
CONSEQUENCE OF NEGATIVE ACTION:
NA
The Board of Supervisors of Contra Costa County, California
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IN THE MATTER OF Declaring February 29, 2024 Rare Disease Day in Contra Costa County
WHEREAS, there are nearly 7,000 diseases and conditions considered rare (each affecting fewer than 200,000 Americans) in the United States, according to the National Institutes of Health (NIH);
Whereas, while each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans;
Whereas, many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected;
Whereas, while more than 450 drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration (FDA), millions of Americans still have rare diseases for which there is no approved treatment;
Whereas, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services;
Whereas, while the public is familiar with some rare diseases such as “Lou Gehrig’s disease” and sympathetic to those affected, many patients and families affected by less widely known rare diseases like Kennedy's Disease, bear a large share of the burden of funding research and raising public awareness to support the search for treatments;
Whereas, thousands of residents of Contra Costa County are among those affected by rare diseases since nearly one in 10 Americans have rare diseases;
Whereas, the National Organization for Rare Disorders (NORD) is organizing a nationwide observance of Rare Disease Day on February 29, 2024;
Whereas, thousands of patients and caregivers, medical professionals, researchers, companies developing orphan products to treat people with rare diseases, and others in the city of Richmond, will participate in that observance;
NOW, THEREFORE, BE IT RESOLVED: that the last day of February 2024, will be observed as Rare Disease Day in the County of Contra Costa.
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