PharmaVOICE Blog Post

Children on the Front Line: The Toll of Rare Diseases – Executive Perspective

Posted By: Dan Limbach
April 25, 2019

Read full article http://bit.ly/PVEx0419

There are currently 350 million people worldwide suffering from rare diseases, and half of them are children.

Parents are the strongest advocates for their children suffering with rare diseases, pushing researchers, companies and regulatory authorities to do more to save their loved ones.

Industry experts weigh in on the challenges and solutions to many of the issues faced by families impacted by rare diseases, including how industry can address some of these challenges.

Here are some of the highlights in this Executive Perspective:

  • The collective search for treatment
  • The role of advocacy
  • Challenges of the rare caregiver
  • Parents’ search for answers
  • Building partners

This Executive Perspective includes input from Ryan Mason, chief creative officer at closerlook. Ryan is father to a child with Kawasaki disease, a rare autoimmune inflammatory condition that affects the blood vessels of young children.

Read full article http://bit.ly/PVEx0419

About the Blog Poster: Dan Limbach

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