Getting Started - Understanding Rare Disease Information

We acknowledge the hard work of families, caregivers and others with programs like NORD Caregiver Respite which allows people some time away while knowing their loved one is well-cared-for and safe.

—Jill Pollander, Vice President of Patient Services

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What it means to be undiagnosed?

Thankfully, your organization and particularly a women who took the time to listen to our situation, to empathize, and to ultimately search for a solution that in the end resulted in a much more positive outcome and a very grateful family. Words cannot describe how important the work your organization does, and the fact that you have such caring, compassionate and ultimately empowered staff makes NORD that much more impactful and powerful. It would have been much easier for her to simply say “no”, but judging by the time she spent with us on the phone this never crossed her mind. Thank you again for what your organization does and for the wonderful people you choose to work with - we’re eternally grateful for one small “win” in an otherwise terrible journey.

—Nicholas Flamel

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Rare Disease Facts and Statistics

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What it means to be undiagnosed?

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Stories That Inspire

Rare Disease Day®

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RareEdu^® - Online Learning Platform

Understanding Rare Disease

Where to Start

Rare Disease Facts and Statistics

Access the Rare Disease Database

What it means to be undiagnosed?

Stay Informed

Stories That Inspire

Rare Disease Day®

Resource Library

RareEdu® - Online Learning Platform

RareEdu^® - Online Learning Platform