Nov. 22, 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 thanks, 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. 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, the focus is on support and benefits for the newly diagnosed. A rare diagnosis can be a frightening and isolating experience, but NORD is here to remind you, ‘Together We Are Strong.’
Coping with Grief and Anticipatory Grief
A rare disease diagnosis can bring feelings of anxiety or pain in response to the anticipation of losses associated with the course of serious illness. Listen to “Coping with Grief and Anticipatory Grief” to hear a panel of parents and professionals share their experiences, coping strategies, and ways that anticipatory grief can provide opportunities for growth, finding meaning, and closure.
Navigating Insurance, Social Security Disability and Patient Assistance Programs
“Navigating Insurance, Social Security Disability, and Patient Assistance Programs” is a critical and applicable resource for any newly diagnosed patients. Watch now and explore various ways rare families can access medical care and financial assistance. Chart your path after diagnosis and know your options!
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
Access the full playlist on YouTube today. Subscribe to NORD’s channel to be alerted to new videos as soon as they are released.