Guest Spotlight: Appreciating Every Patient’s Experience

Guest Spotlight: Appreciating Every Patient’s Experience

Posted by BBK

NORD_image_blog.png“When so many rare disease patients commit themselves to becoming experts of their condition, sponsors must also strive to understand and collaborate with the patients they wish to engage.”

We had the pleasure of having Pamela Gavin, COO for the National Organization of Rare Disorders (NORD) join us for our recent Rare Disease webinar. We then included her thoughtful insights as part of our latest Focus 5 eBook thought leadership series. One of our favorite responses was on how sponsor companies can better support rare disease communities: 

BBK: What can sponsors do, in your view, to take a more active role in supporting rare disease communities?

PG: We’re looking for sponsors to collaborate with patients and patient organizations and to more fully understand the strengths and limitations of the patients, family members and organizations who are supporting their research efforts. The patient’s day-to-day experience extends beyond what may be the focus of a particular treatment, so it’s critically important to have an understanding of the disease from the patient’s perspective when developing the clinical and study design.

Sponsors must recognize that not all rare disease patients are the same. Some patients are strong advocates and others are not. Some are comfortable expressing a strong voice, while many others respect and appreciate the work that advocates are doing on their behalf, but need to address the day-to-day challenges and focus on other aspects of their lives. There is no one-size-fits-all scenario between rare disease patients.

If you haven’t already downloaded our Rare Disease Focus 5 eBook, we hope you’ll do so now. And stay tuned for more Focus 5 excerpts to be shared later this week.


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Topics: eBook, Rare Disease, Rare Disease Research