Nov. 24, 2021
TOPIC: Patients & Members
Posted by Rohan Narayanan
As we reach the holiday season at the end of another challenging but inspiring year, let us take time to celebrate and lift up the rare disease community. For this season of giving, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum. From engaging plenaries to breakout sessions to speakers from across the globe, the dynamic content from the conference is here to help you live your best rare life.
Today’s spotlight is focused on advancing care and the future of the rare journey. Our patient-centric conference featured a number of sessions and powerful discussions centered on the direction and advancement of care; explore these valuable resources below.
Building Resilience in a Time of Unknowns
Watch “Building Resilience in a Time of Unknowns” for courageous stories of people living with a rare disease and the great determination and will they have shown over the years. Resilience is always a relevant topic for those living with a rare disease, as they build and practice resilience through their diagnostic odysseys and wait for new treatments while adapting to a new normal. During the COVID-19 pandemic, this topic remains timely, as many rare disease patients and caregivers have experienced increased feelings of isolation and adjustment to their lives to keep themselves and their loved ones safe.
The Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access
Diversity, inclusion, equity, and accessibility are KEY to finding your place when you enter the rare family. The “Intersection of Rare, Ethnicity and Equity with Diagnosis and Treatment Access” session is a deep dive exploration of health care inequities and disparities in the rare disease community and a poignant discussion of how inequities due to race and ethnicity can make diagnosis and access to quality care even more challenging.
This year and every year, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. One of the most remarkable things about the rare disease community is the universal commitment to making a positive impact for one another. Together, we can continue to help those affected by rare disorders live their fullest lives.
Connect with others and pass on these resources and your thanks this season. #NORDGivesBack