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NORD’s Patient and family forum on June 16 & 17th!
Good morning all!
Did you know that NORD is holding a virtual conference this weekend?
If you didn’t know, NORD stands for the National Organization for Rare Disorders and provides support to rare disease patients, caregivers, physicians, and other supporters. The conference focuses on “gaining practical tools for living optimally with rare diseases.”
This year the conferences theme is “Living Rare, Living Stronger.”
Patients and caregivers can register to attend the conference (virtually) for $39 here
If you are not able to listen much this weekend, people who register will be able to access videos of the conference for the next 30 days!
I will probably register and listen to the discussions over the next month, but won’t be able to make it this weekend.
Let me know if you plan to attend or if any of the topics interest you.
Here’s a list of the topics that will be covered (You can read the full agenda here):
Friday:
4-5 pm: Kick-off concert with Red Grammar
Saturday:
12-1: The Patient-Professional Partnership
1-1:55: “Breakout 1” Coping with grief & anticipatory grief, shared decision- making with your care team, and working while rare
1:55-2:40: Discussion groups about the following topics:
- Living Undiagnosed: The Endless Diagnostic Odyssey
• Parents of Newly Diagnosed Rare Pediatric Patients
• Rare Despair and Bereavement
• Rare Men
• Rare Teens
• Rare Young Adults
• Rare Self Care
2:45-3:30: “Break out 2:” Getting involved in Clinical Research (Finding & preparing for clinical trials), Navigating insurance, social security disability & patient assistance programs, & the ABC’s of advocating for your child’s education
3:35-4:35: Building Resilience in a time of unknowns
3:35-4:45: Day 1 wrap up
Sunday:
12-1: The rare sibling experience
1:05-1:50: “Breakout 3:” Fighting back and fighting forward through advocacy, Palliative care (debunking the myths), & rare in the family (navigating the roles of patient, parent, and caregiver)
1:55- 2:40: Discussion groups about the following topics:
- Getting Involved in Rare Disease Advocacy
- Getting Involved in Rare Disease Research
- Parenting Rare Children
- Rare Disease Caregiver Support
- Rare Relationships: Dating, Partnership, Marriage and Divorce
- Siblings of Rare
- Students for Rare
2:45-3:30: “Breakout 4:” Aging with a rare condition, Finding your community and building your support network, the intersection of race, ethnicity & equality with diagnosis and treatment access
3:35-4:35: Rare breakthroughs now and on the horizon
4:34- 4:45: Day 2 wrap up
Monday:
7 pm: Rare impact awards
- Living Undiagnosed: The Endless Diagnostic Odyssey
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