01/23/2024
Department
DATE: January 23, 2024
TO: Members of the City Council
FROM:
Mayor Eduardo Martinez
Subject:
Proclamation recognizing February 29, 2024 as Rare
Disease Day in Richmond, California
FINANCIAL IMPACT: None
PREVIOUS COUNCIL
ACTION:
February 28, 2023
STATEMENT OF THE
ISSUE: The observance of Rare Disease Day on the last day of February each year provides an opportunity to raise
awareness of rare diseases, highlight the experiences of patients and their families and caregivers, and advocate for improved policies, research, and support for those
living with rare diseases.
RECOMMENDED ACTION:
PROCLAMATION recognizing February 29, 2024, as Rare
Disease Day in Richmond, California - Mayor Eduardo
Martinez (510-620-6503).
DISCUSSION:
AGENDA
REPORT
01/23/2024
Rare diseases affect an estimated 400 million people worldwide, with over 7,000 rare diseases identified to date, many of which are life-threatening and have no known cures.
The City of Richmond would like to shine light on this situation and its circumstances by joining municipalities across the nation in recognizing February 29, 2024, as Rare disease Day. Individuals with rare diseases often face significant challenges in receiving an accurate diagnosis, accessing appropriate treatment and care, and navigating the complexities of the healthcare system. This may also cause significant financial hardship for many individuals and families.
While the public is familiar with some rare diseases, many patients, families, and caregivers affected by lesser-known rare diseases bear the burden of funding research and raising public awareness to support the search for treatments.
Our city must better support individuals with rare diseases and disabilities, their families, their caregivers, and the organizations that work tirelessly to advance research, provide resources and services, and raise awareness of the impacts of living with rare diseases.
DOCUMENTS ATTACHED:
Attachment 1 – Proclamation declaring February 29th, 2024 as Rare Disease Day in the City of Richmond