• Awareness and Advocacy

  Record a short video of yourself and join our Rare Disease Awareness initiative

  Posted by Dagmar on January 24, 2023 at 1:01 am

  
  Feb. 28, 2023, is Rare Disease Day. This day is recognized every year on the last day of February with the goal to spread awareness about rare diseases. BioNews (our parent organization) recognizes the rare disease communities we serve and will join in the global efforts to help generate awareness for the 300 million people worldwide living with a rare disease.

  This year, we will be using social media and community content to help raise awareness and answer the question, “Why does rare disease awareness matter to you?” We will use the hashtag #WhyRare throughout our social media platforms, particularly our corporate platforms of LinkedIn, Facebook, and Instagram.

  What is our end goal/ final product for Rare Disease Day – Feb. 28, 2023?

  Similar to the video compilation that BioNews made around the question, “What makes me rare?” for Rare Disease Day 2020, our final product that we will release and embed into our rare disease sites will be a video compilation of all of us at BioNews sharing our “why” and answering, “Why does rare disease awareness matter to you?”

  Just record a short 15-30 second video answering, “Why does rare disease awareness matter to me?”

  Check out the comment section below where Dagmar will print more details about making your video and where to send it.

  Dagmar replied 1 year, 4 months ago 1 Member · 1 Reply

  • ALS advocacy
  • Rare Disease Day 2023
  • whyrare
• 1 Reply

• 

  Dagmar

  Member

  January 24, 2023 at 10:35 am

  Next steps for making a video:

  1. Preview the example video that Brittany has created for you to view.  https://drive.google.com/file/d/1sRgVMWs-Ils8AVJ8Y_0r0NQOv1nb7077/view?usp=sharing
  2. Please pay close attention to the following video guidelines from our social media team:
     1. Record close to a window to pick up light.
     2. Record horizontally with the best camera you have access to (smartphones work too).
     3. Record in quiet places (avoid noisy streets, turn off any background noise, including TV, music, etc.).
     4. Talk to the camera and speak directly to people viewing.
     5. The video shouldn’t be longer than 15 to 30 seconds.
     6. Don’t introduce yourself. That information will be added later as a caption.
     7. Start your contribution with “Rare Disease Awareness matters to me because….”
     8. -Add your video without any edits to Google Drive. Edit the sharing settings and select “General Access -> Anyone with the link.” Copy this link and share the link via email to [email protected] and [email protected].

  -In the email along with the link, please add your name and if you are associated with one of our rare diseases, please write the name of it.

  1. Jan. 3 week to Feb. 5

  • Submissions will be accepted from Jan. 3-Feb. 5. Late submissions after Feb. 5 may be accepted but must be coordinated with Brittany Foster.
  • Please note: If accessibility accommodations need to be made, please reach out to [email protected] so that you can have the necessary accommodations to contribute to this project. 🙂

Log In to Reply