Feb 28
Friday, February 28, 2025 12:01 am - 11:59 pm Global Celebration

Rare Disease Day is a globally-coordinated movement focused on raising awareness of rare diseases and activating patient communities to share their story and stand up and be counted!

This year, KIF1A.ORG is focused on two important initiatives center around 2/28, Rare Disease Day!

  1. ASCEND survey completion challenge
    • We have 200 KIF1A patients enrolled in our online natural history study!
    • This February, we are challenging everyone enrolled to complete their surveys and assessments, including everyone who is due for their annual survey updates.
    • Chung Lab will email everyone enrolled on January 31st, so keep an eye out for that email.
    • Please complete your surveys as quickly as possible so you don’t forget!
    • And remember… Adding patient data to our ASCEND research study is the single most important action you can contribute to our community.
  2. Miles That Matter for KIF1A campaign
    • Will You Join Us for Miles That Matter for KIF1A?
      • This February, we’re challenging ourselves—and each other—to complete 28 miles (or more!) by February 28, 2025, in honor of Rare Disease Day!
      • KIF1A Associated Neurological Disorder (KAND) can prevent some of our children from ever being able to move, and those who can face the possibility of losing that ability over time. It’s one of the many devastating symptoms of KAND, which is why… WE DON’T TAKE A SINGLE STEP FOR GRANTED.
      • Join us by registering for our challenge, completing your miles, and telling people about KIF1A and KAND. Learn more about this on the Miles that Matter for KIF1A event page!

We are excited to kickoff these to initiatives during the month of February, and celebrate our patients on Rare Disease Day!