The Living Rare, Living Stronger NORD Patient and Family Virtual Forum brings rare patients and families together with health care professionals to network, educate, inspire and have fun. Learn from experts, hear inspiring stories, sit in a wellness workshop and meet others affected by rare disease just like you! The first 200 paid registrants will receive a special “zebra swag bag.”
Living Rare, Living Stronger is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases and physicians and medical students with insights to inform their practices and studies.
Four distinctive program tracks will present workshops geared towards:
- Newly diagnosed patients
- Long-term patients
- Medical professionals and students
The Living Rare, Living Stronger agenda includes sessions in which patients and their families can gain insight and practical tools for living their best lives with rare diseases, covering topics for newly diagnosed patients, long-term patients, caregivers and physicians/medical students.
In addition to the sessions above, this year the Living Rare Forum will provide interactive Q&As and inspiring online panels presented by patients, caregivers and top rare disease medical experts. And there will also be fun and surprises!
I spent May 23 the way I spend a lot of my time lately—sitting in a hearing room at the Maine State House, waiting to see if my elected representatives were moved enough by my testimony to vote the way I asked them to. The issues are often around healthcare, or...