Proclamation Recognizing
February 28, 2023 as Rare Diseases Day in the City of Richmond
WHEREAS, 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; and WHEREAS, rare diseases affect almost 30 million people living in the United States, and two -thirds of those affected are children; and
WHEREAS, individuals with rare diseases often face significant challenges in receiving an accur ate diagnosis, accessing appropriate treatment and care, and navigating the complexities of the healthcare system; and WHEREAS, our country’s for-profit healthcare system makes treatment and care for all diseases overly expensive, burdensome, and is more responsive to corporate profits than human need; and WHEREAS, municipalities, including Richmond, do not adequately anticipate or accommodate the daily needs of disabled people; and
WHEREAS, people with rare diseases are even more vulnerable to the healthcare industry’s profit motive, as treatments and cures are either not economically appealing to treat or are incredibly expensive to procure; and WHEREAS, 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; and
WHEREAS, the observance of Rare Diseases 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; and WHEREAS, our city must better support individuals with rare diseases, their families, their caregivers, and the organizations that work tirelessly to advance research, provide resources and services, and raise awareness of the impact of rare diseases; and
WHEREAS, thousands of residents of the City of Richmond are among those affected by rare diseases, as nearly one in 20 people in the United States have rare diseases.
NOW, THEREFORE, BE IT RESOLVED, that the City of Richmond, does hereby proclaim February 28, 2023, as Rare Diseases Day in Richmond, and call upon all residents to observe this day by learning more about rare diseases, supporting individuals, families, and caregivers affected by these conditions, and advocating for increase d awareness, research, and access to affordable and quality healthcare for all individuals living with rare diseases.
Eduardo Martinez Soheila Bana
Eduardo Martinez, Mayor Soheila Bana, Councilmember