A place for the NY rare disease community to engage!
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New York State Rare Disease Collaborative
What is NYSRDC?
What is NYSRDC?
The New York State Rare Disease Collaborative is a project created to help people with rare diseases and their caregivers work together and with other rare disease community stakeholders on NY specific issues, with a focus on advocacy and helping patients find their own voice. Learn more about us.
The New York State Rare Disease Collaborative is a project created to help people with rare diseases and their caregivers work together and with other rare disease community stakeholders on NY specific issues, with a focus on advocacy and helping patients find their own voice. Learn more about us.
Find help with the challenges of living with a rare disease and inspiring stories of hope!
Read up on New York State policy news and issues affecting people with rare diseases.
Look for organizations serving people with rare diseases, including Every Life Foundation and the National Organization of Rare Diseases!
Learn how you can advocate for people with rare diseases and their caregivers.
Learn more about public and private work relating to the research, diagnosis, and care for rare diseases.
Find events and program from New York State and beyond especially for people with rare diseases.
Some facts about rare diseases in the US:
Some facts about rare diseases in the US:
A rare disease is one which affects fewer than 200,000 people in the United States. (Source: US Food & Drug Administration)
There are an estimated 10,000 rare diseases. (Source: US National Institutes of Health)
An estimated 25 - 30 million Americans, or 1 in 10, have a rare disease. (Source: US National Institutes of Health)
Almost half of all people with a rare disease are children. (Source: Every Life foundation)
On average, it take a person an average of 6 years to receive a diagnosis. (Source: National Organization of Rare Diseases)
Almost 95% of rare diseases lack a specific FDA approved treatment. (Source: US Food & Drug Administration)
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