Mar. 28, 2019
Posted by Christina Jensen
A rare diagnosis can be a frightening and isolating experience, whether you are the patient or a caregiver for a loved one. However, NORD has created a video providing tips for newly diagnosed patients and families as they begin their journey down this new road. One of the key messages is that you are not alone.
“Working with NORD and our nearly 300 member organizations, you can learn how to connect with others, find a medical expert, get involved in research and gain the power that comes with knowledge,” the narrator begins.
Advice provided in the video is based on NORD’s more than 35 years of leadership in the rare disease community. Since 1983, millions of patients and caregivers – many of whom are coping with a new diagnosis – have turned to NORD for information and advice.
Building upon that history as well as input from leading patient advocates and medical experts, NORD’s Educational Initiatives staff compiled 10 tips to help those newly diagnosed with rare diseases take positive steps to become their own best advocates and participate as active partners in their care.
These tips include links to resources from NORD and others to support networking, learning about medical research, and joining the broader rare disease community in advocacy and education.
As always, one of the primary themes is NORD’s key message: Alone we are rare. Together we are strong.®
This video is just one of many resources provided by NORD’s Educational Initiatives Department, which include webinars, videos, fact sheets and databases created specifically for patients and caregivers. For an overview, visit NORD’s Patient and Caregiver Resource Center to find resources such as: