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Jan. 18, 2022

TOPIC: Patients & Members

NORD Gives Back: Working, Aging or Living with a Rare Disease

Posted by Maia Craig

After being diagnosed with a rare disease, your life can change drastically. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to inspire hope for those affected by rare diseases and their families.    

Let’s continue the important conversations regarding the rare disease community with this #NORDGivesBack content, focused on working and aging with a rare disease, with advice on how to live your best rare life. 


Working While Rare 

 In many cases, a rare diagnosis is the end of diagnostic odyssey but the start of an entirely new journey. Check out “Working While Rare” to learn more about being in the working world with a rare condition and how to manage your health while getting the job done. This session identifies ways that workers, employers, and colleagues can create a supportive working environment for rare disease patients. 

Aging with a Rare Condition 

The rare journey can be a long, arduous road, but so many have gone through it who can offer inspiration and a plan of action for what comes next. “Aging with a Rare Condition” features stories of patients living with a rare condition and strategies for getting the most out of life at various stages of illness. Watch now and hear from Kate Lorig, MS, MPH, Dr. PH, Partner Self-Management Resource Center, Nathan Peck, Founder and Chief Executive Officer, Cure VCP Disease Inc., and moderator Patricia Sullivan, North Carolina, Volunteer State Ambassador, NORD Rare Action Network. 

Palliative Care: Debunking the Myths 

The session “Palliative Care: Debunking the Myths” was designed to debunk the myths of palliative care, which is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. Speakers Blyth Lord, Founder and Executive Director, Courageous Parents Network and Michelle Moon, DO, Hospice Palliative Medicine Fellow, University of Nevada, Reno also highlight the major benefits of palliative care, and provide examples of palliative care from day of diagnosis to end-of-life care. 

Connect with others and pass on these resources to allies and advocates you know within the rare disease community. #NORDGivesBack 

Access the full playlist on YouTube today. Subscribe to NORD’s channel to be alerted to new videos as soon as they are released.