The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud.
This theme is our call to action. Let’s elevate our voices as a united rare disease community.
Leading up to Rare Disease Day on February 28th, we invite each person impacted by rare disease to share their #RareIn60.
Create a 60-second video,
60-second photo collage or
60-word summary of what you’d like others to know about cystinosis/the rare disease that has affected your life.
Your message can be geared towards friends and family, colleagues, students, health care professionals, etc.
– Create your #RareIn60
– Post online the week of February 22 (and/or send directly to firstname.lastname@example.org)
– Use #RareIn60
– Let us know you’ve joined the campaign!
Rare Disease Day Raffle
The Adult Leadership Advisory Board (ALAB) has launched a fundraiser in honor of Rare Disease Day. Every $5 donation received is an entry to win a $100 Amazon gift card and some CRN swag. Enter for your chance to win by selecting “ALAB – Rare Disease Day” from the donate page drop down. The winner will be drawn on March 1. Good luck!