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PTLD Patient Focused Drug Development Meeting with the FDA Wednesday May 4

SRKakaniTransplant Patient
Updated May 2, 2022 in General

If you or a loved one has been impacted by post-transplant lymphoproliferative disorder (PTLD) your story matters.

The National Organization for Rare Disorders (NORD) is hosting an externally-led Patient-Focused Drug Development meeting on Wednesday, May 4. Join us to listen to the community, share your experiences, and let your voice be heard!

Post-transplant lymphoproliferative disorder (PTLD) is a rare, but well-known complication of solid organ transplants and hematopoietic stem cell transplantation. This meeting is for the patient community to share their experiences with researchers and FDA drug developers. 

This is a historic milestone in drug development. PTLD is rare, but a well-known complication of solid organ transplants and hematopoietic stem cell transplantation, and is its own #raredisease without an FDA-approved drug. Because PTLD does not have its own patient support organization, it is imperative for us as a #transplant community to come together and join the meeting to have our voices heard by the FDA and researchers. 

Please register (even if you can only attend part of the meeting) at www.bit.ly/PTLD-PFDD

1 - 3 of 3 Replies

  • Sdey0522Transplant Patient

    HI @SRKakani was this event recorded ?

    Thank you!

    May 9, 2022
  • SRKakaniTransplant Patient

    Yes @Sdey0522 you beat me to it! I came on to post this. Hi everyone if you were unable to attend the Patient-Focused Drug Development meeting for PTLD last week you can still contribute!

    1) NORD recapped the meeting in this blog post - https://rarediseases.org/nord-hosts-the-largest.../

    2) You can watch a recording of the meeting here and listen to the patient/caregiver testimonies - https://rarediseases.org/externally-led-post-transplant.../

    3) Please answer the poll questions that were live during the meeting but still can be answered and your answers will be recorded for the FDA - https://www.surveymonkey.com/r/2022PTLDPFDD

    4) If you have additional comments or thoughts that you would like included in the Voice of the Patient report (summary report for the community and FDA), please email events@rarediseases.org by Saturday, June 4, 2022

    Please do contribute if you or a loved one has been affected by PTLD. Your experiences are very valuable and needed to be heard by medical leaders and the FDA in order to make changes to the diagnostic and treatment processes.

    May 12, 2022
  • Sdey0522Transplant Patient

    Thank you @SRKakani 👍

    May 12, 2022
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