KGI’s 15th Annual Rare Disease Day

Hi everyone! Students for Rare– NORD invites KGI and the rare disease community to join us in raising awareness for rare disorders at the 15th Annual Rare Disease Day Event. We are excited to learn about and discuss topics in this year’s theme, “Cutting-Edge Technology in Rare Disease.” The event will feature multiple speakers who are currently working with rare diseases and relate to the event theme, as well as a student poster competition and trivia games. This event is free and open to the public, so everyone is welcome! Please complete the registration form for the Zoom link.

If you have any questions or concerns, please contact the club president, Shoshana Cohen, at sfr_nord@students.kgi.edu. We hope to see you virtually on March 4th to celebrate rare disease awareness with us!

Registration: https://docs.google.com/forms/d/e/1FAIpQLSeFe7LDgKcGsmssAKmRnJOcTLs6oc7XSdJk0OZTmz9GR7m1bw/viewform?usp=sf_link

Featured speakers:
Dr. Jesse Lee Berry, MD — Keck School of Medicine of USC and Children’s Hospital Los Angeles    
Dr. Alisa Dong, PhD —  Aruvant Sciences
Dr. Amay J. Bandodkar,  PhD — North Carolina State University            
                                                         
Event Sponsorship:
Students for Rare – NORD club is very grateful to our event sponsor, Spark Therapeutics! Today, as a member of the Roche Group, Spark is focused on breaking barriers for people and families affected by genetic diseases, including blindness, hemophilia, lysosomal storage disorders and neurodegenerative disease, and currently has four programs in clinical trials. At Spark, the vision is a world where no life is limited by a genetic disease.

Important Links:
Agenda: https://drive.google.com/file/d/1xjSXQOY6xJrdPNM5S08AFx8RHluK-UcC/view?usp=sharing                                                Student Posters: https://online.flippingbook.com/view/1040836806/

Rare Disease Day Events: https://www.rarediseaseday.org/
NORD website: https://rarediseases.org/

Important Announcements and Reminders (Before the Event):
The event will involve choosing your own breakout room to view the posters for the competition, so please make sure to update your Zoom app.
Updating Zoom: https://support.zoom.us/hc/en-us/articles/201362233-Upgrade-update-to-the-latest-version
Choosing your own breakout room (under self-selecting a breakout room): https://support.zoom.us/hc/en-us/articles/115005769646

Kahoot will be the platform for rare disease themed trivia between speakers. In addition to learning about rare diseases, it gives participants the chance to win prizes!

How to join and play:
kahoot.com
https://www.youtube.com/watch?v=rZUew1wIQts