Rare Disease Report

Do You Want to Be a Rare Disease Superhero?

SEPTEMBER 15, 2016
Andrew Black, James Radke PhD
Do you want your child to know they are a superhero? 

Do you want to be a superhero?
 
This week, the “Uncommon Strength” global campaign was launched that allows people with rare conditions to be heroes for their rare condition and help share their stories with others.
 
The campaign by Alexion reaches out to those impacted by a rare disease such as patients nad  caregivers, and provides them with a fun way for to be involved in the rare disease community by creating their own rare disease superhero while learning about certain diseases in the process.
 
Any rare disease patient can create a superhero story but for now, the campaign  is focused on 4 rare diseases in particular: atypical hemolytic uremic syndrome (aHUS), paroxysmal nocturnal hemoglobinuria (PNH), hypophosphatasia (HPP), and lysosomal acid lipase deficiency (LAL-D).  
 
During the creation process, Uncommon Strength provides educational information those rare disease along with access to key resources and advocacy organizations around the world where patients and caregivers can go for support as well.
 
The campaign also offers interactive social media elements to unite the community.
 
By clicking on to http://uncommonstrength.com/ you can do any or all of the following:
  • Create a personal aHUS, PNH, HPP, LAL-D, or rare disease “hero avatar” to show their unique courage, strength, and perseverance, and support the rare disease community.
  • Share custom hero avatars over social media or e-mail to help generate a broader conversation about rare diseases and inspire people across the globe to learn more and get involved in awareness efforts.
  • Then update your personal Facebook and Twitter profile pictures with a customized photo filter to spread the word about aHUS, PNH, HPP, LAL-D, or rare diseases in general.
  • View other heroes created in the gallery.
 
Raising awareness for rare diseases can be challenging, with creative concepts like Uncommon Strength, rare disease awareness can be more fun, easier to do, and allows kids to get involved in the action as well.
 
The campaign is sponsored by Alexion Pharmaceuticals. Images obtained from uncommonstrength.com 


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