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Apr. 18, 2019

TOPIC: Events, Featured News, Get Involved, Patients & Members

Become a rare disease mythbuster during NORD’s Living Rare, Living Stronger Patient & Family Forum

Posted by Lisa Sencen

The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives with rare diseases, with tracks for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. Download the full agenda now for a look at the sessions, speakers, events and fun that will make this weekend in Houston one to remember!

6 Rare Disease Myths Debunked by Living Rare, Living Stronger

Myth #1: I’m all alone.
TRUTH: You can escape that feeling of isolation. Come to the Living Rare, Living Stronger Forum and meet other patients and caregivers who know what you’re going through.

Myth #2: There’s too much I need to know about my disease.
TRUTH: You were not born knowing genetics or how to manage your care. We’re here to help you navigate medical topics and explore how to find the information you need from sources you can trust.

Myth #3: I need to be strong.
TRUTH: It’s okay to ask for help. We have workshops on the emotional burden of living with rare diseases and can help you identify appropriate care and social support resources to help carry the load.

Myth #4: I shouldn’t dress up and go out—rare disease doesn’t take a “day off.”
TRUTH: Everyone deserves to take a night off! The Rare Impact Awards is a celebration of those making a difference in rare diseases. What better reason to get spiffed up and celebrate than to recognize heroes advancing rare disease research and policies?

Myth #5: It’s too difficult to navigate a museum with my child’s special needs.
TRUTH: We are taking over Space Center Houston for the Rare Impact Awards and making it KID FRIENDLY for all with rare diseases.There’s no better opportunity to explore a museum than with other rare disease patients, caregivers, advocates, medical professionals and supporters than this.

Myth #6: Yoga and wellness is for fit people who can bend and move—it’s not for me.
TRUTH: We are bringing adaptive yoga instructors to our wellness room with the goal of making it accessible for as many as possible, regardless of ability or fitness level.