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Making Our PSC Voices Heard

Patient-Focused Drug Development Forum (PFDD)

#PSCVoicesPFDD

Please Complete the OUR VOICES Survey

The OUR VOICES Survey sets the groundwork for the

Making Our Voices Heard:

Patient-Focused Drug Development Forum (PFDD)

October 23, 2020

We know your time is precious - if there is ever a time for 100% patient participation, it is NOW!

The survey only takes about 30 minutes, and your voice is crucial. You can choose to access this survey through one of two avenues. See the paths below.

Deadline: August 14, 2020

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Your Participation in the Our Voices Survey is Important Because… 

•      The survey is your opportunity to express how primary sclerosing cholangitis (PSC) impacts your life and why enhanced treatments and a cure are so important for your life and/or the life of a loved one.

•      All data collected is de-identified (no name, birthdate, etc.) and will help drug developers determine future clinical trials.

•      In the brief time it takes you to complete the survey, you will be giving scientists valuable information that will impact their research.

•      Strong, community-wide participation shows how committed our rare disease community is to PSC research and finding treatments and a cure for this rare disease.

•      For those who complete the survey via the Registry, your name will be automatically entered in a drawing for prizes. The Grand Prize is free registration for the 2021 PSC Partners Annual Conference!

Here's why CEO of PSC Partners Ricky Safer wants YOU to complete the OUR VOICES Survey.


Making Our Voices Heard:

Patient-Focused Drug Development Forum (PFDD)

October 23, 2020

All PSC community members are encouraged to participate in this virtual forum.

This gathering is a unique, valuable opportunity for PSC patient voices to be heard by attendees who will include the FDA, pharmaceutical leaders, researchers, and clinicians. 

"We are hoping for participation by as many PSC patients, caregivers, and family members as possible," says PSC Partners Medical Science Liaison Joanne Hatchett. "If there is one time we need full participation, this is it, because we want the FDA to experience the commitment and unmet needs of our patient community in order to understand the urgent need for treatments and an eventual cure for PSC."


Top Five Reasons the PSC Community MUST Attend the Vitual PFDD Meeting

  1. This is a once-in-a-lifetime opportunity for PSC voices to be heard by the FDA, pharmaceutical representatives, and researchers who are all there to listen and learn.
  2. A large, varied, international group in attendance at this virtual meeting will demonstrate the strength, passion, and drive of our community.
  3. This is YOUR chance to express how PSC impacts your life and/or the life of a loved one.
  4. You will be able to let drug developers and researchers know how important new treatments and an eventual cure are for thousands of people throughout the world. 
  5. Most importantly, we hope this meeting will result in advances that will lead to finding a cure for primary sclerosing cholangitis (PSC).

How You Can Participate

  • Please complete the Our Voices Survey. It only takes about 30 minutes and will be used to inform the conversation during the Making Our Voices Heard: PFDD Forum. Click on the survey link above.
  • Plan to attend the Making Our Voices Heard: PFDD Forum on Oct. 23, 2020. Our community has the opportunity to speak to FDA leaders, pharmaceutical representatives, and researchers who will be attending the meeting in listening mode only. Login information will be available soon.
  • Put your feelings in writing. How does PSC impact your life? We will compile all written statements and include them in The Voice of the Patient final report. Send to contactus@pscpartners.org.
  • Create artwork that expresses how this often invisible illness makes you feel. The de-identified artwork will be displayed throughout the meeting and included in the final report. Send an email with artwork attached to contactus@pscpartners.org.
  • Contact your friends and family in the PSC community and encourage them to attend this unique meeting.

 It's important to have participation by PSC patients of all ages, parents, caregivers, loved ones, and friends. 

WE CAN'T DO IT WITHOUT YOU!

Let's tell our stories and make our voices heard.

TOGETHER, WE WILL FIND A CURE!

Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.