14th Annual Rare Disease Day

Hello, all! Come join the KGI community to help raise awareness for rare disorders at the NORD club’s 14th Annual Rare Disease Day. Collaborate, discuss, and learn about “Integrating Telehealth in Rare Disease”. Agenda items include:

• Speakers from the rare disease community
  • Dr. Stephanie DiTroia, PhD — The Broad Institute of MIT and Harvard
  • Dr. Xiaowu Gai, PhD — Children’s Hospital Los Angeles
  • Dr. Bridget Ann Fernandez, MD, MS, FRCPC (Medical Genetics), FCCMG, FACMG — Children’s Hospital Los Angeles
• Patient advocacy panel
  • Dr. Ben Calvert, volunteer at Cystic Fibrosis Foundation
  • The Sturge-Weber Foundation
  • Osteogenesis Imperfecta Foundation
• Poster competition
• Trivia Games to win fun prizes

This event is free and open to the public, so everyone is welcome! Please complete the registration form for the Zoom link. The first 35 KGI students to register will receive conference gifts! If you have any questions, please contact ekeomanee19@students.kgi.edu. We look forward to seeing you all! 

Link to register: https://forms.gle/3CUa1eHdFgCdXjzA8

Important Links for the Event: 

• Poster Competition PDFs – https://online.flippingbook.com/view/461844776/
• Agenda/Pamphlet – https://drive.google.com/file/d/1YWtlTsJtK7bRyUP1jSHL0kg42xRetfo-/view?usp=sharing
• Word Search (can be completed anytime throughout the event) 
  • Top Score Gets a Prize
  • https://game.educaplay.com/
  • Game Pin: 369588

Patient Advocacy Organization Links:

• Osteogenesis Imperfecta Foundation: https://oif.org/
• The Sturge-Weber Foundation: https://sturge-weber.org/

Resources:

Rare Disease Day Events: https://www.rarediseaseday.org/

NORD website: https://rarediseases.org/

NORD Telehealth Principles: https://rarediseases.org/advocate/policy-priorities/nord-telehealth-principles/

Important Announcements and Reminders Before the Event:

• The event will involve choosing your own breakout room to view the posters for the competition, in order to do this, please make sure to update your Zoom app.
  • How to update Zoom: https://support.zoom.us/hc/en-us/articles/201362233-Upgrade-update-to-the-latest-version
  • How to choose 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 trivia games in between speakers. In addition to learning about rare diseases, it gives participants the chance to win prizes. Here are the links on how to join and play :
  • kahoot.com
  • https://www.youtube.com/watch?v=rZUew1wIQts